Personal Health Information Management

Transcription

KAIJA SARANTO, PATRICIA FLATLEY BRENNAN, ANNE CASEY (EDS.)
Tools and Strategies for Citizens’ Engagement
Proceedings of the Post-Congress Workshop of the 10th
International Nursing Informatics Congress - NI 2009
Vanajanlinna, Finland, July 1-4, 2009
University of Kuopio, Department of Health Policy
and Management, Kuopio, Finland
University of Wisconsin-Madison, Madison, Wisconsin, USA
Royal College of Nursing, London, UK
Distributor :
Kuopio University Library
P.O. Box 1627
FI-70211 KUOPIO
FINLAND
Tel. +358 207 87 2200
http://www.uku.fi/kirjasto/julkaisutoiminta/julkmyyn.shtml
Editors’ Affiliations:
Kaija Saranto, RN, PhD
Department of Health Policy and Management
P.O.Box 1627
FI-70211 KUOPIO
FINLAND
E-mail: [email protected]
Patricia Flatley Brennan, RN, PhD, FAAN
University of Wisconsin-Madison,
Madison, WI
USA
Anne Casey, RN, MSc
Royal College of Nursing
UK
Reviewers:
Docent Marianne Tallberg, RN, PhD
University of Kuopio
President Katriina Laaksonen, RN, MNSc
Finnish Nurses Association
ISBN 978-951-27-1321-9
ISBN 978-951-27-1342-4 (PDF)
Kopijyvä
Kuopio 2009
Finland
Saranto, Kaija, Brennan Flatley, Patricia and Casey, Anne (Eds.) Personal Health
Information Management: Tools and Strategies for Citizens' Engagement. University of
Kuopio. Department of Health Policy and Management 2009. 214 p.
ISBN 978-951-27-1321-9
ISBN 978-951-27-1342-4 (PDF)
Abstract
Personal health information management systems (PHIMS) encompass a broad range of
information processing tools and strategies, computerised or not, that assist individuals in
managing their engagement in health care and in carrying out healthcare actions. These
systems include but are not limited to personal health records and web-based portals to
clinical information systems. These tools hold great promise for engaging citizens in their
health and health care. Nurses will play key roles in the design and deployment of these
innovations. Thirty-one experts and students in the field of nursing informatics from 18
countries were invited in the spring of 2009 to participate in the post-congress workshop.
The aim of the workshop was to produce recommendations for PHIMS adoption
worldwide. The following content areas were chosen: Definition of Personal Health
Information Management Systems (PHIMS), Specifying user requirements for PHIMS,
Technical and infrastructure requirements for PHIMS,: Integrating PHIMS into clinical
practice; Confidentiality and Safety, Policies that foster adoption and use and Preparing
nurses to practice in a wired world.
The 2009 workshop proceeded in four stages: preparation for the discussion; on-site
engagement and discussion; web-engagement; final report.
The definitions, statements and recommendations related to personal health information
management systems are presented in this volume as the key output of the workshop,
contributed to by experts from across the globe. The country reports provided by the
attendees and others provide examples of how the tools and strategies considered in the
workshop are being deployed in the different regions of the world with their very different
healthcare models and cultures.
Medical Subject Headings (MeSH): Information Systems; Information Management;
Informatics; Nursing; Health Services; Personal Health Services
Foreword
The invitational workshop entitled Personal Health Information Management: Tools
and Strategies for Citizens' Engagement, held in Vanajalinna, Finland July 1-4, was the
tenth in a row of post-congress workshops arranged in connection with an IMIA-NI
sponsored Nursing Informatics congress. Each time a different theme has been
selected, profoundly discussed and analyzed and thereafter disseminated to a larger
audience. From the beginning, one of the aims for IMIA-NI has been to develop
recommendations and guidelines related to nursing informatics (Tallberg, 2008).
The first workshop with invited experts followed our first congress in London 1982. A
wish to get many countries represented at the workshop was linked to a compulsory
paper by each participant. The post-congress papers and discussions were then edited
and published together with the congress papers, a glossary and a bibliography, both
these last items being much needed at that time. In his conclusions to the proceedings
Barry Barber made a statement we should never forget: “The human needs of
individuals must not get lost in the elegance of systems...nurses must control nursing
and computing systems must not lure them into making decisions incompatible with
good nursing practice.”
The 1985 Calgary post-congress slogan, Challenges for the Future, mirrored many
challenges that are still with us today, for example, the integrated patient record and
nursing language. Three years later in Killarney, Ireland, we discussed decision support
systems in nursing from the perspectives of nursing practice, education, management
and administration and research.
In summarizing the Healthcare information technology: implications for care at the
Melbourne 1991 post-congress workshop, Kathleen McCormick made an early
prediction of the demand on nurses today: “...smarter nurses will use technology to
practice nursing more efficiently and may reduce costs, or at best balance the high costs
of rising salaries and technology costs”. Informatics: The Infrastructure for Quality
Assessment and Improvement in Nursing was the theme for the fifth workshop held in
Texas in 1994. In Lidingö, Sweden in 1997, there was lively discussion among
participants debating ethical views related to patient’s preferences versus clinical
guidelines. Recommendations from that post-congress workshop were sent to the
International Council of Nurses.
Evidence was the overall theme of the event in the year 2000, held in Auckland, New
Zealand - how to build evidence, how to access it and how to apply it. Group work was
also completed on applying clinical pathways and outcomes; implementing evidencebased practice in acute care as well as in primary care, community care and home
health care.
The goal of the Rio de Janeiro workshop in 2003 was to recommend an agenda for
patient safety in the field of health informatics. Sixteen papers were presented as a start
for the group work, the results of which are presented in the proceedings: Improving
Patient Safety with Technology. In the proceedings of the workshop after the Seoul
congress in 2006 Peter Murray wrote: “The purpose of the NI2006 Post Congress
Conference was to explore a range of possibilities...all of which need to be considered
in order to move towards a future we do seek to envisage or influence”.
With this historical overview my intention has been to show how large the field of
nursing informatics is in reality, and perhaps also to awake a desire in many nurses to
acquaint themselves with some of the publications. I hope there will also be a wide
distribution for this new IMIA-NI publication. I will take the opportunity of writing
this foreword to thank the Finnish Nurses Association for all their efforts to make the
Tenth International Congress on Nursing Informatics and its post-congress workshop
so successful.
Marianne Tallberg
Honorary member of the International Medical Informatics Association
Nursing Specialist Group – IMIA-NI
Reference
Tallberg, M. (2008). 25 Years in a Nutshell – IMIA-NI, 1982-2007. Methods of Information in Medicine, 47
Suppl 1,173-178.
Preface
The 10th International Nursing Informatics Congress (NI2009) sponsored by the
International Medical Informatics Association Nursing Informatics Special Interest
Group (IMIA-SIG NI), was held in Helsinki, Finland at the Helsinki Fair Centre June
26th to July 1st, 2009. The Finnish Nurses Association co-sponsored the Congress
together with IMIA-NI and supported the organisation of the conference. In the
tradition of IMIA-SIG NI a post-congress workshop was held and this took place from
July 1st to July 4th in Vanajanlinna.
This year the post-congress workshop theme was Personal Health Information
Management: Tools and Strategies for Citizens' Engagement. All together, 31 experts
representing 18 countries worked intensively for almost three days both in groups and
joint sessions. These proceedings present the key outcomes of the workshop with
content organized in six sections. A summary of the main NI2009 Congress main
conference is provided followed by several papers introducing and describing personal
health information management systems (PHIMS). Reports from the post-congress
event demonstrate the intensive and innovative work of the groups and country reports
give an overview of the international state of art in PHIMS. The purpose of the
workshop and the publication of the proceedings is to enhance the our understanding of
the citizen’s role in health information management.
As the chairmen of the workshop we want to thank the enthusiastic participants for all
their knowledge, skills and efforts and their sharing of time in such a generous way. It
was very rewarding to experience the commitment of the working groups, the
friendship among participants and the shared enjoyment of moments of the Finnish
culture, especially when visiting the sauna and swimming in the lake.
We hope this book will give as much inspiration to our readers in their work as the
workshop gave us.
Patricia Flatley Brennan
Kaija Saranto
Chair for the workshop
Co-chair for the workshop
Contents
CONNECTING HEALTH AND HUMANS – SUMMARY OF THE 10 TH
INTERNATIONAL NURSING INFORMATICS CONGRESS
13
Kaija Saranto and Anne Casey
INTRODUCTION TO THE POST- CONGRESS WORKSHOP – Personal Health
Information Management: Tools and Strategies for Citizen’s Engagement
17
Personal Health Records, Infrastructure and Standards
19
William Goossen
Aims, Settings, Stages and Strategy for the Post-Congress Workshop
25
Kaija Saranto and Patricia Flatley Brennan
PERSONAL HEALTH INFORMATION MANAGEMENT SYSTEMS –
INTRODUCTION AND REPORTS FROM THE WORSKHOP
29
Personal Health Information Management Systems
31
Patricia Flatley Brennan
Usability Considerations for Personal Health Information Management Systems
41
Suzanne Bakken, Carme Espinoza, Kathy Johnson and Lynn Nagle
Technical and Infrastructure Requirements for Personal Health Information
Management Systems
51
William Goossen, Anne Casey, Kristiina Junttila, Susan Newbold and Hyeoun-Ae Park,
Integrating Personal Health Information Management Systems into
Clinical Practice
68
Patricia C. Dykes, Robyn Cook, Leanne M. Currie, Satoko Tsuru and Patrick Weber
Confidentiality and Safety, the Personal Perspective
Peter J. Murray, Robyn Carr, Elvio Jesus, Pirkko Kouri and Polun Chang
83
Governance and Policies that enable the Adoption and Use of Personal Health
Information Management Systems
103
Heather Strachan, Anneli Ensio, Ragnhild Hellesø, Joyce Sensmeier and Walter
Sermeus
Personal Health Information Management Systems & Education: Preparing Nurses to
practice in a Wired World
120
Diane Skiba, Helena Blažun, Anna Ehrenberg, Heimar Marin and Anne Moen
PERSONAL HEALTH INFORMATION MANAGEMENT AROUND THE WORLD
– NATIONAL EXAMPLES
135
Australia
137
Robyn Cook
Brazil
142
Heimar Marin
Canada
144
Lynn Nagle
England and Wales
149
Anne Casey
Finland
152
Anneli Ensio, Kristiina Junttila, Pirkko Kouri and Kaija Saranto
Japan
158
Satoko Tsuru
Korea
161
Hyeoun-Ae Park
New Zealand
165
Robyn Carr
Norway
170
Ragnhild Hellesø and Anne Moen
Scotland
Heather Strachan
176
Slovenia
181
Helena Blazun
South-Africa
183
Graham Wright and E M Ellis
Sweden
187
Anna Ehrenberg
Switzerland
190
Patrick Weber and Christian Lovis
Taiwan
193
Polun Chang
USA
197
Suzanne Bakken, Patricia Brennan, Leanne Currie, Patricia Dykes, Kathy Johnson,
Susan Newbold and Diane Skiba
CONCLUSIONS
205
NI Congress and Post-Congress Workshop Continuum
207
APPENDIX
211
List of participants in the NI 2009 Post-Congress Workshop - Personal Health
Information Management: Tools and Strategies for Citizen’s Engagement
213
13
Connecting Health and Humans – Summary of the
10th International Nursing Informatics Congress
Kaija SARANTOa and Anne CASEYb
a
University of Kuopio, Kuopio, Finland
b
Royal College of Nursing, UK
Introduction
The workshop which is the subject of this book of proceedings was planned to follow
the 10th International Nursing Informatics Congress (NI2009), an event sponsored by
the International Medical Informatics Association Nursing Informatics Special Interest
Group (IMIA-NI - www.imiani.org). In this opening chapter we set the scene for the
chapters to follow by providing and overview of the themes and key messages from the
main Congress (Saranto, Brennan, Park, Tallberg and Ensio, 2009).
NI2009 was held in Helsinki, Finland at the Helsinki Fair Centre June 26th to July 1st,
2009. The Finnish Nurses Association co-sponsored the Congress together with IMIANI, and provided support for its organization. The Nursing Informatics Congresses
have been a major activity of IMIA-NI. They are held every third year, with the venue
changing from one continent to another so that nurses and others can participate more
easily. The scope of the Congress programmes is drawn from the definition of nursing
informatics used by IMIA-NI. This definition was updated at the meeting held during
NI2009 in Helsinki, Finland, the first update since 1998. IMIA-NI states that: “Nursing
Informatics science and practice integrates nursing, its information and knowledge and
their management with information and communication technologies to promote the
health of people, families and communities world wide.” All members of the special
interest group are encouraged to use this definition in preference to others, especially in
anything they are writing about nursing informatics.
Each country responsible for organizing the international NI congress has been able to
give it their own touch, sharing the global view of nursing and health informatics. The
theme for the conference in Helsinki: Nursing Informatics - Connecting Health and
Humans was chosen in part because of the focus of current eHealth initiatives in the
European Union but also because there are many global activities to strengthen the role
of consumers in health information management. Keynote speakers were invited for
their expertise in relation to the conference theme but also for their ability to present
developments in the wider field of nursing informatics.
Messages from International Keynote Speakers
Since the Congress was being held in Europe, it was opportune that the present
president of IMIA, Reinhold Haux, is from Germany. This made it easy for him to
change smoothly his welcome address to introduce the first keynote presentation:
Sensor-Enhanced Health Information Systems for Ambient Assisted living: New
Opportunities for Nursing Informatics. The presentation was by Michael Marscholleck,
14
who demonstrated how sensors can transmit timely data from home to caregivers and
enhance safety. The next speaker also focused on patient safety, a very acute
international theme at the moment. David Bates from the USA shared with the
audience some astonishing research results and statistics that demonstrate just how
patient safety can be improved with IT. Professor Bates also described contributing
factors to adverse events and medication errors and emphasized the importance of
safety risk management in health care.
Charles Friedman, also from the USA, shared his vast experiences and described major
initiatives in eHealth. This topic has been of high priority in the member states of the
European Union and a special session was organized during the conference to
disseminate experiences in different EU countries. Helena Leino-Kilpi from Finland
inspired the audience by focusing on confidentiality and privacy questions in nursing
care. As a newcomer to the specialty she had searched the literature to see whether and
how ethical issues were addressed by nurse informaticians. Her conclusion was that
there is plenty of material on ‘how to act right / well’ but almost none on ‘what is right
/ good’. She concluded that the concept of ethical competence in health technology was
not evident, indicating there needs to be more of a focus on the theme of ethics in
future scientific papers.
All previous NI congresses have provided a good introduction to newcomers in the
field of nursing informatics and this was no exception. The keynote presentation given
by Evelyn Hovenga, a pioneer in the field, described the major milestones in IMIANI’s history. Being an active member in the work of the International Standards
Organization she also highlighted the importance of future activities for nurses,
especially increased participation in health Information technology (HIT) development
at national and international levels. Evelyn is also a pioneer in educational initiatives
and has influenced recommendations for health informatics education developed by
IMIA.
The importance of resources and finances was the essence of the keynote presentation
in the closing ceremony of the Congress. Jacob Hofdijk, special advisor and president
of the European Federation of Medical Informatics gave examples of contributing
factors that affect nursing costs. He also shared ideas on how to develop casemix
information when defining healthcare costs. The title of his paper was provocative: The
Health Care Delivery Revolution is about to Start – Take your Chances! Perhaps due to
the global economic situation, the audience totally agreed with his statements.
Congress Themes
During the three days of the Congress, the programme followed 10 themes: Clinical
Workflow and Practice Applications; Patient Safety; Consumer Health Informatics and
Personal Health Records; Education for Consumers and Professionals; Evidence Based
Practice and Decision Support; Health Information Technology; National eHealth
Initiatives across the Globe; Patient Preferences and Quality of Care; Strategies and
Methods for Training; and Terminology, Standards and NMDSs. Out of more than 400
submissions, 132 oral presentations were made and 105 scientific posters presented,
including 11 student posters. There were 11 panel discussions, eight workshops and
seven scientific demonstrations. The presenters represented more than 35 countries.
The three days programme was organized according to the Congress themes so that the
different presentations complemented each other. As in previous congresses, among the
15
most popular sessions were within the theme Clinical Workflow and Practice
Applications. The solution to almost eternal question of how nurses will benefit from
information technology in nursing practice and management has only slightly changed
over the years. This time the focus was on nursing sensitive outcomes and how HIT
can facilitate assessment of the effects of nursing care. The development and
implementation of information systems, electronic records and terminologies were
described from various perspectives. In many papers there was also a relation to patient
participation, evidence-based practice or patient safety. It was clear that there is still a
debate about how best to integrate nursing informatics into nursing curricula and on
how to structure NI education in order to support development of health informatics
competencies in all nurses.
Outcomes and Lessons for Future Events
Feedback based on the conference evaluation forms was very positive. Presenters were
assessed as experts in the field; the chairs of the sessions were felt to have guided the
presenters well and given the audience time for discussions. The posters were well
prepared and there were active discussions but also lively debates on the material
presented. All comments and questions were highly valued by the authors. The poster
Peer Support from Online Community on the Internet among Patients with Breast
Cancer in Japan by doctoral student Yoko Setoyama received the first NI poster award
donated by the Caring society.
Recent advances under the concept of Social Media were also presented and used
during the conference. Social media is an umbrella term for Internet sites that are set up
for users participate and generate content. It includes social networking through sites
such as Facebook and group working sites such as Google groups
(http://groups.google.com/). Khanna (2008) referred to social media as the new
resource for healthcare information. Experiences in using Second life in education and
new web tools were topics that greatly interested the audience. The Congress was also
accessible through twitter - you could receive brief summaries of presentations each
day, even if you were miles away from Helsinki. Obviously, the event stays alive in
many Facebook pages where participants have stored their memories of NI2009.
It was clear that one of the sessions most highly values by the participants was the
panel on Nursing Informatics History; it was so popular that all attendees could not be
seated in the room! With hindsight, this special event should also have been recorded
using new technology. However, some of the fine content can be accessible through the
nursing informatics history project pages (https://www.amia.org/niwg-history-page)
However, in the panel the spontaneous comments and questions made by our
distinguished pioneers will always remain unique memories.
References
Khanna, P. M. (2008) Icyou: how social media is the new resource for online health information. Medscape
Journal of Medicne, 10(5), 113.
Saranto, K., Brennan, P., Park, H., Tallberg, M., & Ensio A. (2009) (Eds.) Connecting Health and Human.
Proceedings of the 19th International Congress on Nursing Informatics. Amsterdam: IOS Press.
INTRODUCTION TO THE POST-CONGRESS
WORKSHOP
Tools and Strategies for Citizens’ Engagement
19
Personal Health Records: Infrastructure and Standards
William GOOSSEN
ICT innovations in healthcare, Windesheim Zwolle and
Results 4 Care, Amersfoort, the Netherlands.
Introduction
In the last few years, personal health records (PHRs) have been developed as an
addition to the computerized medical record or electronic health record. There are
many definitions and conceptualizations of these records and there is overlap among
them. However, it is clear that the core of the PHR is that the person is in control. He or
she decides what goes in the PHR, what goes out, how it is managed and who gets
access. There are enablers and barriers that influence the uptake of PHRs. Increasingly
patients fulfill a double role of both subject of care and member of the
multidisciplinary team of health care professionals. In some instances, the person even
coordinates the professional team. In the context of this new emerging role mix, the
PHR is moving from the simple storage system of free text facts to a full health
informatics system. Thus, the PHR itself is professionalizing and it requires different
standards and infrastructural requirements. This paper defines the PHR and reviews
barriers and enablers. It sets some baseline infrastructural options, and illustrates those
standards in health care systems that are common, with proposals for the level to which
the PHR should address such standards.
Personal health records have gained more interest in the last decade. Individuals use
these applications to store data and manage a health / illness history. Tang, Ash, Bates,
Overhage and Sands (2006) envision the PHR as an addition to professionally managed
electronic health records (EHRs). Legal requirements will usually enforce health
professionals to manage patient records and document their assessments, diagnoses,
treatment and care. However, it is largely acknowledged that during a patient's lifetime
the number of discontinuities is uncountable, errors can be attributed to lack of
continuity and information technology can contribute to health improvements if used
wisely (IOM, 1999).
Defining the PHR
There are several definitions available, but since the topic of this chapter is standards
for the PHR, the proposed definition from the International Standards Organization is
presented here: The Personal Health Record of an individual is a repository of
information considered by that individual to be relevant to his or her health, wellness,
development and welfare, and for which that individual has primary control over the
record’s content. (ISO, 2009).
The core here is that the record is about an individual and that the individual has
control over the record content (Tang et al., 2006). ISO (2009) argues that: "The key
distinction between the Personal Health Record and the Electronic Health Record is
20
that the individual who is the subject of the record is the key stake-holder determining
its content and with rights over that content”. This can be handled by individuals for
themselves, and or for family members, for example, a child caring for an elder, or
alternatively a parent for a child and so on. How all that can be done using different
infrastructures will be explained first, after which existing standards are discussed,
followed by the impact these might have on the PHR.
Enabling or Blocking?
Miller, Yasnoff and Burde (2009) identify key barriers and enablers for the PHR.
Barriers include costs, lack of incentives, lack of integration and data exchange, among
others. Enablers include incentives, collaboration and integration. Incentives and
reimbursement can help PHR emerge, such as payments for e-Visits and/or monitoring.
Miller et al. (2009) suggest looking at a prevention oriented payment scheme.
Collaboration models stimulate patients to use PHRs, for instance where patients can
self manage chronic diseases, are encouraged to comply with treatment plans, practice
efficiency, or complete pre visit questionnaires Integration of PHRs into existing EHRs
or other Health care IT are helpful. This would improve the ease of use and limit
problems due to absence of data communication.
Consumer barriers include privacy concerns, data entry and lack of integration (Miller
et al., 2009). For example, only tethered PHRs are covered under US Health
Information Portability and Accountability Act (HIPPA) (Miller et all, 2009).
Consumer enablers include trust in safety of system, ease of use, feeling empowered
and control and incentives. According to Miller et al. (2009), the single group that is
most active is individuals with highest number of different medical diagnoses in PHR.
Infrastructural Considerations for the PHR
There are different options available to put a PHR in place. The baseline is that there
are three main approaches to the PHR (Tang et al., 2006, Miller et al., 2009). The first
option is that an individual uses a free available software package on a stand alone
machine. That requires manual maintenance, data entry and data management. Miller et
al. (2009) argue that stand alone versions can have consumer data entry, physician of
staff separate log in, and are not integrated or only partial integrated with an EHR. The
stand-alone model is mostly used by practices that have no EHR, or no PHR integrated
in EHR.
Another evolving approach is the always and everywhere accessible dedicated web
based health records like Google Health or Microsoft Health vault among others. Here
the individual does have to do their own data management, but is independent of
location. The big advantage is that if in hospital, the record still can be accessed. Of
course, it still is necessary to manage the data separately from an EHR and to sort out
access by health professionals. Both of these approaches are more or less independent
of the professional health records, requiring duplication of effort and granting another
opportunity for errors caused by that.
21
The best option seems to be that the PHR functionality is provided by allowing
individuals to view the health information that is stored about them in their health care
provider’s EHR. A key question here is whether such an integrated PHR, or its source
HER, allows further data communication and if the content of record is transportable
from one system to the other. For instance, use of the HL7 v3 Care Record message
would allow the data to become more independent from one particular system, and
allow exchange of data.
Example PHR systems that are integrated with provider EHRs include that of Kaiser
Permanente in the US (for all patients generically) and Portavita in the Netherlands and
Germany (for cardiology and diabetes patients specifically). Such so-called 'tethered'
systems have the advantage that the quality of data and continuity of care can be
achieved. One legal requirement will be that the data entered by the individual can be
distinguished from the data entered by the health professional.
There are different examples of means to allowing individuals to access to the PHR.
For instance: by allowing the individual personally entering the content; by the
individual authorising one or more parties or systems to contribute to the PHR; or by
the individual authorising the creation of a PHR on his or her behalf by an organisation
or person whose anticipated purpose is considered relevant and trustworthy by the
subject (ISO, 2009). Each form will require setting up an access system and security
measures.
Classifying PHR Functionality
In the ISO new standard development, the following five axes for classification of PHR
are defined (ISO, 2009). This is likely to change during development, but gives a good
starting point to discuss some issues in relationship to infrastructure and standards.
Axis 1: Scope of the information: to what extend and what kind of information is stored
and managed in the PHR. But also, what use can be made of the data in the PHR, e.g.
summarizing data in reverse order, for instance via date/ time stamp or source, setting
trends etc. Also think about the quality and validity of (true) data, using data standards
in order to obtain and use discrete data for analysis.
Axis 2: Access control; how is that arranged and who is granting access to whom.
Axis 3: Data custodianship; who is responsible for the quality and content, and what
legal requirements are relevant.
Axis 4: Repository auditability; is it possible, and if so how, to control who is getting
access to data and how the data are managed.
Axis 5: Interoperability and communication; is it possible for the PHR to automatically
send and receive data to and from EHR or other electronic systems.
22
Miller et al., 2009 identify legal issues, like data ownership, consumer id verification,
malpractice (large volume, quality, accuracy and completeness, change in defining
standard of care). Also, opt in/out regulations are important for individuals and are best
profile based.
Standards Typology
One of the challenges of the application of modern health care information and
communication technology (HIT) is the integration of clinical materials with
technology that traditionally have been developed in different areas of research and
development. A core issue in the EHR is that of semantic interoperability, best in such
an intelligent format that the receiver knows what to do and can do it correctly.
Goossen (2006a) defines it as follows: "Intelligent semantic interoperability between
EHR systems in health care is defined as ‘the electronic exchange of clinical patient
information in such a format that the intended meaning of the information from the
sender can be interpreted by the receiver without changes or loss’. The addition of
‘intelligence’ implies that clinically relevant knowledge is applied to the content,
structuring and processing of the electronic documentation and of the information
exchange. It can be argued that the same holds for PHR, but with one caveat: the
carefully defined concepts in the professional EHR, are not necessarily well understood
by a lay person deploying a PHR.
Goossen (2006b) has developed a typology of five different standards domains that
need to be applied in order to achieve intelligent semantic interoperability. These are
briefly discussed here as a step up for the consequences of each for PHR development.
The first domain is knowledge, in the format of clinical standards to achieve quality
care for patients, based on evidence. Examples include reliable and valid assessments,
scales, evidence on treatments, medication effectiveness and so on. The second
concerns the terminology used to document the care for purposes of continuity and
semantics. Examples include standard terminology as ICNP and SNOMED CT,
classifications such as ICD 10, but also the exact wording of, for instance, a Braden
Scale.
The third category concerns workflow for workflow. Care processes, including the
cooperation between professionals, and decisions made and leading to the selection of
the best course of action are modelled to allow support of the dynamic nature of health
care in electronic systems. In particular clinical pathways and decision support systems
can help health care delivery and need standardisation. The fourth area is the
information modelling area in which in particular the objects in the real world are
represented in information classes, the objects’ characteristics are defined in attributes,
and relationships between classes are expressed. Information modelling serves as
method to develop systems that facilitate semantic interoperability via exchanging
information between different electronic systems. The fifth area covers the technical
standards, those necessary to let ICT operate, and in particular the technical measures
that guarantee the privacy and protect data, among others.
23
Implications for PHRs
If we look at the impact from infrastructural and standards deployment perspective we
can identify several areas of work related to PHRs. These will be discussed below
using the typology of standards, where most areas from the classification fit in well.
Firstly, clinical content quality would include making medical knowledge and data
understandable by lay people. This handles the scope of information and implies that
the individual can manage the information in a meaningful and sensible way. It is
consistent with axis 1 of the proposed ISO standard for PHRs. If data quality is good,
then options become available that can contribute to better health, lesser complications
and longer life. Miller et al. (2009) suggest for instance predictive modelling becoming
possible after years of data collection on populations levels from PHR. This does
require research and ethical committee standards for research policies. It is mainly
secondary data use and data analyses. Would it allow behavioural changes into desired
healthy directions?
Related to the content of data, that is, their meaning, which is often represented by
using standard terminologies, the use of lay terms and mapping from lay terms to
professional terms might be important. But how and to what extend? This would also
cover ISO axis 1. Workflow and care processes need to be defined around the patient,
the individual as an actor deploying a kind of self management in the context of
complementary professional care. How can we design self care pathways? What is the
role of the PRH in the overall care management?
Information modelling is important as it is a core requirement for PHRs, in order to
access data from EHR and other health IT systems, or to submit such data. It covers
axis 5 from the ISO proposal. If patients are using devices more frequently, for
example, blood glucose meters, blood pressure meters, and so on, how can such
devices interact with the PHR? And how are data send from PHR to EHR? Devices can
feed data automatically to the EHR, so why not to the PHR? But then, what standards
ensure the semantic interoperability in an intelligent way? Are we also going to
integrate the PHR with decision support systems, if only for self medication
interactions with prescribed medications, or for advice on healthy behaviours? Would a
decision support system, based on standards be able to tackle adverse medication
interactions in the PHR? If that is going to happen, then the PHR must adhere to a
wealth of standards and regulations.
Finally, a fifth impact concerns technical standards, in particular the infrastructural
issues that need to be addressed (stand alone, world wild web, or safe integrated with
EHR systems). This is consistent with the axes 2, 3 and 4 from the ISO proposal. In
particular, questions include how to arrange access control and the question who should
be in charge? Also there is the responsibility for governance of data. Can we allow the
individual to erase inconvenient data from the EHR, where the professional is legally
responsible for? Finally, it is common practice to never erase information from EHR,
just define it irrelevant from a point in time onward. How can we manage this so that
audits can take place? This concerns both the individual, but also, who is protecting the
professional in such circumstances?
24
If integration of data sources is missing to a large extent on the professional level
(Miller et al., 2009), how can it be expected to be integrated with the PHR? Money can
be an enabling factor, but will we pay for the right functions here? One development is
of interest here: Detailed Clinical Models are a new concept for technical content
standards that specify small amounts of clinical data with respect to guidelines /
evidence base, terminology, data modeling, workflow along with technical
specifications where relevant (Goossen, 2008).
Summary and conclusions
By discussing the PHR from the perspective of infrastructure and standards it becomes
clear that a PHR fully integrated with the EHR offers both patients and health
professionals the best opportunities for effective and efficient health care, in particular
through management of health care information. Different infrastructures such as
stand-alone systems, fully internet based but not integrated portals, and so called
tethered systems that are fully integrated are evolving but it is these latter that offer the
best value, according to the literature (Tang et al., 2006; Miller et al., 2009). In relation
to standards, it is clear that all types of standards apply in a similar manner to the PHR,
although another dimension is created due to the need to address the individuals
themselves. This does require similar standards applied to PHR compared to the EHR,
but each time with the extra dimension of making it understandable and controllable by
the individual lay person. Information analysis then can be seen as a core enabler. That
work should be linked to business needs, data specifications and workflow. Many
questions still need to be answered, and we can contribute to that right now.
References
Goossen, W. T. (2006a). Intelligent semantic interoperability: Integrating knowledge, terminology and
information models to support stroke care. Studies in Health Technology and Informatics, 122, 435-9.
Goossen, W. (2006b). Representing clinical information in EHR and message standards: analyzing,
modelling, implementing. In Peck, C. & Warren, J. (Eds) HINZ Primary Care and Beyond: Building the eBridge to Integrated Care. Health Informatics New Zealand (HINZ) & Health Informatics Society of
Australia
Goossen, W. T. F. (2008). Using detailed clinical models to bridge the gap between clinicians and HIT. In:
De Clercq, E., De Moor, G., Bellon, J., Foulon, M., & van der Lei, J. (Eds). Collaborative Patient Centred
eHealth. Proceedings of the HIT@Healthcare 2008 conference, Amsterdam: IOS press, 3-10.
Institute of Medicine (1999). “To Err is Human” Building a Safer Health System. First, Do No Harm.
Washington: Institute of Medicine.
ISO (2009). NIWP N09-011. Personal Health Records: Definition, Scope and Context, Draft Technical
Report. Geneva; ISO.
Miller, H. D., Yasnoff, W., & Burde, H. (2009). Personal Health Records: The Essential Missing Element in
21st Century Healthcare. Chicago: HIMSS
Tang, P. C., Ash, J. S., Bates, D. W., Overhage, J. M., & Sands, D. Z. (2006), Personal health records:
definitions, benefits, and strategies for overcoming barriers to adoption. Journal of the American Medical
Informatics Association, 13(2), 121-126.
25
Aims, Settings, Stages and Strategy for the Post-Congress
Workshop
Kaija SARANTOa and Patricia FLATLEY BRENNANb
a
b
Introduction
The purpose of the IMIA NI post-congress workshop is to bring together, immediately
after the triennial international nursing informatics Congress, an invited international
group of health care and informatics professionals with wide expertise in nursing and
health informatics to draw up a synthesis of a special topic. The 2009 theme was
Personal Health Information Management: Tools and Strategies for Citizens'
Engagement reflecting the importance consumer involvement in health care. In many
countries, eHealth strategies strongly emphasise the development of means to engage
citizens more thoroughly in managing their own health related information.
Personal health information management systems (PHIMS) encompass a broad range
of information processing tools and strategies, computerised or not, that assist
individuals in managing their engagement in health care and in carrying out healthcare
actions. These systems include but are not limited to personal health records and webbased portals to clinical information systems. These tools hold great promise for
engaging citizens in their health and health care. Nurses will play key roles in the
design and deployment of these innovations.
Aim and Themes
The NI2009 post-congress workshop took on the challenge of providing guidelines for
creating and using information technologies in support of an informed, engaged
population. The aim of the workshop was to produce recommendations for PHIMS
adoption world-wide. To achieve our aim, invited experts worked in seven groups
chaired by leading nurse informaticians, addressing the following content areas:
Personal Health Information Management Systems (PHIMS): What are they?
Who's using them? What should nurses know about them?
o Chair: Patricia Brennan
Usability questions: Specifying user requirements for PHIMS
o Chair: Suzanne Bakken
Technology: Technical and infrastructure requirements for PHIMS
o Chair: William Goossen
26
Practice: Integrating PHIMS into clinical practice: guidance for nurses
o Chair: Patricia Dykes
Consumers: PHIMS - Confidentiality and Safety
o Chair: Peter Murray
Governance: PHIMS - Policies that foster adoption and use
o Chair: Heather Strachan
Education: PHIMS & Education: Preparing nurses to practice in a wired world
o Chair: Diane Skiba.
Process for the Workshop
The 2009 workshop proceeded in four stages: preparation for the discussion; on-site
engagement and discussion; web-engagement; final report.
Preparation for the Discussion
Thirty-one experts and students in the field of nursing informatics from 18 countries
were invited in the spring of 2009 to participate in the post-congress workshop. They
were asked to provide, by June, a short paper describing the state of PHIMS
deployment in their country, summarising the key nursing issues related to the design
and use of PHIMS and proposing agendas for action. It was very rewarding to notice
how engaged each authors were. Their prompt responses made it possible to review
the reports from various countries prior to the main NI2009 Congress. The country
reports served as an introduction to the workshop and enabled a broad, multi-national
perspective on the themes and questions that were developed to guide the workshop
content and activities.
On-Site Engagement
The workshop took place between July 1st and 4th, 2009, north of Helsinki. The venue,
approximately 100km from the city centre, afforded easy access yet provided the
inspiring atmosphere of an old mansion called Vanajanlinna. The event began with
introductory remarks by all of the participants. Next, the 31 experts were reviewed and
affirmed the aims and objectives of the workshop.
Seven invitees accepted invitations sent prior to the NI Congress to serve as group
leaders. The groups each addressed one of the seven themes listed above. Each group
leader (chair) started with a framing talk that outlined and focused the work of her/his
group. Small group work sessions allowed in depth discussions; large group meetings
permitted cross-group exchange. The outcomes of the discussions during the working
hours were shared with other attendees in joint sessions. Feedback of the overlapping
issues was argued during the joint discussions and guidelines for further development
for the reports and recommendations were stated.
27
Web engagement
During the workshop, a shared work space was set up by one participant in the Google
Groups environment (http://groups.google.com/). By supporting joint-work on
documents and helping to maintain version control, this technical innovation helped
accelerate the work of all of the groups. Resource materials could be posted and
accessed by members throughout the workshop itself and members could also keep
track of the work of all other work groups. After the workshop, the web environment
supported international collaborations and ensured that members of each group,
regardless of location, could engage in the development of the final report.
Final Report
This volume serves as the official repository and final documentation of the work of
the Post-Congress workshop of the NI2009 Congress. The definitions, statements and
recommendations related to personal health information management systems are
presented in this volume as the key output of the workshop, contributed to by experts
from across the globe. The country reports provided by the attendees and others
provide examples of how the tools and strategies considered in the workshop are being
deployed in the different regions of the world with their very different healthcare
models and cultures.
Conclusion
We hope that readers will find this volume a starting point for accelerating adoption of
personal health information management technologies in their home countries. The
papers that follow contain both conceptual considerations and practical strategies that
can support the development and deployment of information technologies in support of
health and everyday living!
PERSONAL HEALTH INFORMATION
MANAGEMENT SYSTEMS
Introduction and Reports from the Workshop
31
Patricia FLATLEY BRENNAN
University of Wisconsin-Madison, Madison, WI, USA
Introduction
Personal Health Information Management Systems (PHIMS) encompass a broad range
of information processing tools and strategies, computerized or not, that assist
individuals in managing their engagement with health care services and in executing
healthy action. PHIMS include but are not limited to personal health records, webbased portals to clinical information systems, and special-purpose use of emerging
social network tools like Facebook and Twitter. PHIMS represent one type of health
information technology, that, in conjunction with electronic health records and health
information exchange initiatives, usher in the era of technology enhanced health care.
The idea of applying information technology solutions to the challenges of personal
health information management enjoys wide acceptance by the medical informatics
research community (Tang, Ash, Bates, Overhabe & Sands, 2006), health care
providers and payers (e.g. Aetna, 2009), and the lay public world wide (Cronin, 2006).
In the United States, these innovations are frequently referred to as personal health
records. In Australia, innovations like “Health Book” serve the purpose of supporting
personal health information. “Wise Health Cards” are found in Slovenia, and in the
United Kingdom, a Web application called “Health Space” is found.
PHIMS support personal health information management. Examples of personal health
information management challenges include tracking the results of laboratory tests,
recalling instructions from a physician office visit, or monitoring one’s own health or
the health of family member (Moen & Brennan, 2005). Lay people develop robust, rich
strategies for managing health information in the home. They use familiar objects like
file folders and calendars to keep track of information deemed important or to remind
them of appointments and significant events. Work by Brennan and colleagues (Moen
& Brennan, 2005) explored the personal health information management challenges
faced by 49 community-dwelling adults. They documented that most households
handle 8-10 different types of health information, including treatment advice and
instructions, insurance claim forms, appointments and clinical contact data, and general
health resources and health promotion information. Although physicians and clinics
were the most common sources of information, lay people also valued health
information they received from family and friends, local news reports, and the public
library. The family calendar served as a common health information management tool,
as did binders, file drawers, and, occasionally, computerized files. Importantly, in more
than two-thirds of the households, a single member, usually a woman, served as the
primary health information manager.
.
32
This is an auspicious time for nurses around the world to systematically consider how
PHIMS could assist lay people in accomplishing health goals. The so-called “first
generation” PHIMS, which focused largely on acquiring and storing health data, is
rapidly being replaced by “next generation” solutions that effectively use data to help
guide lay people in taking health actions. The remainder of this chapter will serve to
advance a definition of PHIMS, speculate on their value to nursing, examining some of
challenges that must be faced when advocating for wide-spread adoption of PHIMS,
and illustrate how some next generation PHIMS addressed some of those challenges.
PHIMS – What are they?
Personal health information management systems (PHIMS) are best defined as:
…an electronic application through which individuals can access, manage, and
share their (health) information, and that of others for whom they are authorized,
in a private, secure, and confidential environment (Connecting for Health, 2003).
While this definition was originally advanced as referring to personal health records,
one type PHIMS, it includes all of the key components found in any PHIMS
component:
…an electronic application – PHIMS are consumer-facing computer tools that
could be accessed intentionally by lay people, through a web-browser or some other
computer system, but also available on cell phone platforms, embedded within devices,
or integrated with other emerging technologies. Ideally, PHIMS reside in a networked
environment affording access to and sharing of data and related applications in a
technologically-integrated manner.
…through which individuals – PHIMS are designed for use by lay people, not
health professionals, and therefore may share features with other consumer electronics,
such as simple interfaces, ubiquity (accessible everywhere), and durability;
…access, manage and share their health information – PHIMS enable
individuals to acquire, read, or send health data. PHIMS have a wide range of
information management services, including mechanisms to acquire health information
from clinical records, databases for storage of health data on a local computer or in
some public repository such as Microsoft’s HealthVault© or GoogleHealth©, and
electronically send health information to other parties such as family caregivers or
clinicians. Next-generation PHIMS, such as those described below in the Project
HealthDesign initiative, not only display relevant data but use innovative data
integration and visualization approaches to provide meaningful, interpretation of the
data, launch clinical alerts or make health behavior recommendations. A significant
challenge in personal health information management at the present time arises from
the lack of common data and terminology standards that preclude integrating data from
may sources into a single display.
…and that of others for whom they are authorized – a notable aspect of
PHIMS is that they reflect and support personal health information management
behaviors. In many households and family situations, one member handles the health
33
information for another, such as an adult daughter for a parent. Such informal sharing
of health data has long been an informal practice in many families, however,
introducing an electronic tool to support such common family behaviors makes more
formal these informal arrangements;
…in a private, secure, and confidential environment – PHIMS must provide a
level of privacy and security that matches that desired by the individual about whom
the information refers to at a level desired by that individual. Some individuals may
prefer to keep all information strictly private; others may with to share information
with family caregivers, health professionals, or emergency response workers. A
hallmark of PHIMS is that the privacy management is under the user’s control, and
needs to be technically implemented in a way that is easily managed by lay people
(Simons, Mandl & Kohane, 2005).
These characteristics of PHIMS, although expressed in idealized fashion and not yet
fully implemented in PHIMS in most countries, describe essential features and
functions of personal health information management tools. PHIMS complement and
extend information gathered at the point of care by providing a focal point of health
information integration around the patient, not the clinical care provider or institution.
The data embedded in PHIMS are envisioned to include genetic information, results of
clinical encounters, and observations generated directly by the patient (Adida &
Kohane, 2006). Currently, the perceived primary value, and consequently the
informatics development efforts, favor PHIMS that support institution-generated data
and needs over those which may best serve the patient. Next generation solutions are
envisioned to be more consumer-facing, using the data gleaned from various sources
into decision support and guides for action that improve the health of lay people.
PHIMS developments over the last 15 years emerged first in specific clinical
populations and later extended to generalized applications supporting access to clinical
records for all persons receiving care from a facility. Some approaches to patientcontributed health records are found among pediatric care settings (O’Flaghery,
Jandera, Llewellyn & Wall, 1987) and in behavioral health interventions (Giglio,
Spears, Rumpf & Eddy,1978). The wide-spread adoption of WWW tools contributed to
the development of web-based access to clinical information systems (e.g. PatCIS
(Cimino, Patel & Kushniruk, 2002), PatientSite (Weingart, Rind, Tofias & Sands,
2006).
Health information technology vendors are rapidly developing patient access tools
among their suite of electronic medical records (e.g. Epic MyChart,
www.epicsystems.com). However, most of these approaches are “tethered” to a given
institution or care situation, and largely focus on insuring patient access to data
collected in the course of clinical care. “Untethered” personal health records are freestanding repositories into which an individual can record various observations, such as
dietary plans or exercise monitoring information. An example of an untethered PHR is
that provide by WebMD ™ (www.webmd.com).
Tang and colleagues recently provided a state-of-knowledge assessment of the
prototype PHIMS, personal health records, with an emphasis on computer-based
implementations (Tang et al., 2006). Personal health records serve as repositories of
34
clinical and self-monitoring information, and hold greatest value when the personal
health record is closely integrated with the records created in the course of clinical care.
Tang and colleagues acknowledge the need for augmenting access to clinicallygenerated data with the ability to record personal observations and gain access to
helpful resources such as decision support and care management guidelines.
The very idea of using clinical records to engage lay people in personal health
information management is not new. Indeed, in 1975, Ruth Lubic, a nurse midwife,
created a then-revolutionary clinical information management system at the Maternity
Center in New York (Lubic, 1975). In the Maternity Center, patient charts were kept in
front of, not behind, a reception station, and on arrival, the patient recorded
observations such as weight, urine protein, etc. Lubic’s records presaged a fundamental
concept found in today’s personal health records agenda: patients and clinicians serve
as co-authors of the clinical record (Fischbach, Sionelo-Bayog, Needle & Delbanco,
1980), and the record itself as an information link between the clinician and the patient.
However, Lubic’s records remained stored on-site at the clinic, and did not offer any
support for health information management in the home.
PHIMS are growing in sophistication and acceptance, and could provide significant
value to nurses as they help lay people manage chronic conditions and ascribe to
health-promoting behaviors. It is timely for nurses around the world to consider how
PHIMS may be useful in their practice and what clinical, technical and ethical
considerations must be addressed to insure full value.
PHIMS – Considerations for Nurses
In this section clinical, technical, and ethical, legal and social issues related to PHIMS
and nursing are explored. This is not intended to be an exhaustive treatment of these
issues, but rather an introduction to some important considerations related to nurses’
uses of these innovations. Detailed exploration of these themes is provided in the
chapters that follow reporting the work of experts at the post-congress workshop.
Clinical Issues
PHIMS have great potential to assist nurses in their work with patients both in
institutions and in the community. Institution-based nursing practice can be enhanced
by the understanding of the every-day health experiences of the individual that can be
afforded though PHIMS, and PHIMS may provide the pathway for institution-based
nurses to extend discharge teaching instructions into the everyday lives of patients.
Community-based nurses can use PHIMS to help people better track health concerns,
observe and interpret patterns that provide insights into the relationship between everyday living events and health indicators, and foster independence and self-management
among patients.
PHIMS provide technological adjuncts to clinical nursing practice, complementing and
extending nurses’ abilities to shape people’s lives and promote their independence and
well-being. Perhaps the most valuable contribution of PHIMS lies in their potential to
help lay people understand their health and take action based on meaningful
interpretation of data.
35
It is useful to think of PHIMS suite of applications that draw from a range of health
data, from excerpts of clinical records, to journal entries recording mood changes over
time, to recordings of daily exercise activity. Visualization tools applied to these
various types of data could reveal patterns relating health events and life activities.
Decision support tools could integrate laboratory values, daily nutrition choices and
insulin regimes, helping people with metabolic syndrome maintain optimal blood
glucose control.
Technical Issues
Unlike their institutional counterparts which rely on relatively standard computer
terminals and data models PHIMS are characterized by a wide-range of technologies.
PHIMS may be embedded in standard computer systems, but increasingly may rest on
cell-phone platforms, “smart” clothing and devices in the home that are integrated into
the health and every-day living of the people who use them, and Web 2.0 tools. Thus,
the technological environment of PHIMS is characterized by great diversity. This
diversity is good, in that it is likely to spawn really useful tools that easily fit into
people’s lives; however, hallmarks of quality and trustable information systems need to
be augmented with those better fitting the highly varied technological environment.
PHIMS are part of the larger health information technology infrastructure, and are
subject to some of the same technology development challenges found in the
development and deployment of clinical records systems and computerized providerorder entry systems. Currently, the approach to PHIMS development and deployment
can be characterized as fragmented and non-scalable. The absence of data standards,
shared terminologies, and common architectures plague PHIMS as much as their
absence continues to challenge the development of electronic health records.
Current conceptualisations of the PHIMS rest on implicit expectation that a person
(clinician, patient, parent) must literally read, then process the specified content of the
record. Indeed many discussions of personal health records emphasize screen design,
layout, and the availability of on-screen navigation and interpretation assistance as
critical success factors. However, the benefits of PHIMS could be greater if new
models of human computer interaction, such as those arising from agent-based models,
were incorporated in their design. PHIMS might be designed to support dynamic
capture of data gleaned in day-to-day living situations; and integrated those
observations with advice, recommendations or engaging displays; and guided action,
not simply data collection. For example, a camera-equipped cell phone could be used to
capture a picture of a meal, send the image through an analysis program, query a
nutritional database, and make a recommendation about modifications or warnings for
food allergies.
Sophisticated processes, such as medication reconciliation now recommended for every
clinical encounter could be accomplished by automatic, agent-directed review of
electronic documents, rather than having the nurse and patient together review a
screen-summary or a printout of recent prescriptions. Additionally, configuring patient
preferences for care activities (e.g. life support, advanced directives) as a type of
guideline implementation and inserting that guideline into an electronic record system
could form the foundation of rules to govern subsequent care decisions.
36
Thus the technological challenges arise from an unusual co-occurrence of events - a
plethora of technology platforms whose application and use is restricted by a vision of
health information technology anchored in a view of human computer interaction in
which all computer output must be filtered through the eyes and cognition of a person.
Accelerating innovation and adoption of PHIMS must be tempered be consideration of
the ethical, legal and social issues related to their use.
Ethical, Legal and Social Issues
PHIMS raise unique ethical, legal and social issues not found in other applications of
information technology in health care. These issues include privacy and security, the
benefits and risks of a unique health identifier, and economic considerations including
who will pay for PHIMS and how to stimulate wide-spread use of PHIMS while not
exacerbating the digital divide, and managing consumer expectations of clinicians’
willingness to use PHIMS in the care process. It is worth paying particular attention to
the issue of privacy and security.
PHIMS present an interesting and somewhat paradoxical set of issue around privacy
and security of health data. If one considers privacy as the individual’s discretionary
right to disclose personal information, then PHIMS afford a unique opportunity to
provide a technological mechanism to implement that perspective. The largely
distributed structure of PHIMS, where data may reside in several institutions and public
repositories, demands a mechanism to safely integrate data about an individual person.
This need suggests that a unique person identifier could be of significant value; indeed,
several countries, including Australia, New Zealand, the UK and Norway have
embraced this identifier. Other countries, including the United States, perceive that a
unique person identifier creates security risks disproportionate to the benefit. Complete
resolution of these paradoxes is unlikely yet need not hamper adoption of PHIMS.
New models of data security will emerge, ones driven more by the protection of data
elements rather than the institutions where data are stored or used. Furthermore, given
the involvement of other family members in each other’s care, privacy and security
models must be robust enough to support the realities of how people experience health
in their lives.
PHIMS raise one consideration related to privacy and security not found in any other
health information technology application – the challenge of managing privacy in
informal settings. The very presence of a health-focused technology in the home raises
awareness on the part of other family members of health concerns that an individual
might prefer to keep private. PHIMS raise the challenge of expanding the privacy
model beyond focusing solely on the data alone but also on the manner in which
devices could inadvertently disclose private information.
This section identified and reviewed clinical, technical and ethical, legal and social
issues related to PHIMS. The next and final section includes a description of an
initiative designed to illustrate a new vision of PHIMS.
37
Next-Generation PHIMS
The Project HealthDesign program is presented here in some detail to illustrate
progress towards achieving the vision of robust PHIMS1.
Project HealthDesign , an initiative sponsored by the Robert Wood Johnson Foundation
with the support of the California HealthCare Foundation, sought to expand the idea of
PHIMS, specifically personal health records, from data collection and storage tools to
vibrant, powerful tools that assist lay persons to take action that promotes
accomplishment of health goals and management of complex health problems. Nine
teams participated in a 6-month intensive design experience, set up to insure that their
approach to PHIMS design engaged and responded to the needs of their self-identified
populations of interest. Creating a new vision of PHIMS, one that encompassed the
idea that PHIMS should guide action for health, required exciting the medical
informatics community, health information technology (HIT) vendors, behavioral
health specialists, and clinicians engaged in the use of HIT to improve health.
One way to stimulate innovation in personal health records is to encourage designers to
think about separating the unique aspects of an application from the infrastructure
needed to support the application. Unique aspects of an application include the specific
components, such as blood glucose level capture and presentation or nutritional advice
based on food preferences. The infrastructure dimension includes general health
information and technical functions that under gird the application. These might
include core data elements, such as medications, laboratory results, allergies, diagnoses
and family history, and technical services, such as message handling and access
controls that can be shared by multiple applications. For example, two personal health
applications could include a medication management tool that would alert someone
when it was time to take one of his or her medications and a tool that could help
someone minimize medication expenses by searching the Internet to offer generic
substitutions or discover the lowest available prices.
Both of these applications would rely on access to an accurate, up-to-date medication
list, which could be provided as part of a common platform. Having a standards-based
common platform with open application programming interfaces (APIs) and a highly
flexible architecture could stimulate greater competition and innovation in the
development and marketing of PHR applications, which could lead to a greater
diversity of products and services.
Encouraging designers to develop PHR applications that can easily enter the public
domain represents a second approach to stimulating innovation. The contemporary
proprietary approach to software development contributes to a legacy of noninteroperable applications. Lay people face many health problems concurrently, and a
proprietary approach to PHR development necessitates that the individual cope with
multiple stand-alone, potentially incompatible tools to manage their health information
and health practices. Project HealthDesign promoted a new vision of development, one
in which a range of applications rest on a common data exchange platform, all
developed within a public-domain approach to software development.
38
Nine innovative demonstration projects emerged under the Project HealthDesign
initative. Video stories, software products, and documentation can be viewed at
www.projecthealthdesign.org. Two projects addressed medication management. The
Vanderbilt team built “My medi-health” – a cell-phone enabled medication alerting,
dispensing, and recording system for use by children who need to take medication
throughout the day. A bar-code scanner and hand-held computer display was built by
the University of Colorado team to assist elders returning home from hospital care with
reconciling new medications with existing medications. The way adolescents integrate
technology, friendships and health prompted a team from the Art Center College of
Design and Stanford University to devise a health/time line to improve adolescents’
coping independently with complex health problems.
The University of California-San Francisco team created a public-domain integrated
calendaring system that helped women facing breast cancer treatment to incorporate
their treatment schedule with important family and work events, thus supporting
optimal function during a crisis period. Using a hand-held device the University of
Massachusetts team built a tool to help patients with non-cancerous pain better
understand what aggravates their pain and what responses are most effective.
Three teams dealt with patients with metabolic syndrome: the RTI project implemented
a proven behavioral-change strategy in a web environment; the University of
Washington team developed a cell-phone/glucometer linkage to support insulin
management between office visits and the Joslin/TRUE team created iGoogle gadgets
to provide throughout-the-day decision support to patients with unstable diabetes. At
the University of Rochester, a computer science team investigated natural language
tools to guide patients in a self-assessment. These tools demonstrated two important
advances in PHIMS design: patient-centered design leads to devices that fit into everyday living and public-domain approaches lead so significant sharing and innovation.
Technical challenges
Two major classes of technical challenges must be addressed to make the applications
envisioned in these projects fully functional. The first set includes a range of tools
needed to capture and display data in real time. For example, some of the proposed
PHR applications required a way to capture and record the food consumed or the
activities undertaken in the course of day to day activity. Applicants envisioned using
videophones, diaries contained on personal digital assistants or web sites, and audio
recordings to capture these data. The second technical challenge focused on the need to
extract data from electronic clinical records or personal health records. Many
challenges exist in this arena: identity, authorization and authentication management,
efficient tools for locating and extracting information from clinical records, language
and message standardization to insure that information drawn from disparate sources
can be integrated into a single view.
The potential of creating useful personal health applications can be defeated by the
technical challenges that underlie effective electronic information capture, transfer, and
integration. These challenges are not unique to the personal health records arena;
indeed, devising effective strategies to integrate data from different electronic health
records would benefit the entire health IT industry and health care as a whole.
39
Nonetheless, it is through envisioning the potential of personal health records that it
will be possible to enumerate the challenges common across various applications and
begin to set priorities for solving them. By envisioning the technical challenges that
are common across multiple personal health applications we hope to stimulate
development in this area. Rather than having each PHR and personal health application
solve the same technical challenge repeatedly and potentially in a suboptimal manner,
identifying the common shared challenges will allow creating common, shared
solutions.
Conclusion
The future for PHIMS that can support health promotion actions is bright and vibrant!
PHIMS may provide the technological support to patients that enable them to better
engage in health care services and health promoting behaviors. PHIMS can extend
nurses abilities’ to support patients’ toward self management. Technical challenges and
ethical, legal and social issues, while daunting, may be best addressed through new
approaches that address the context where personal health information management
occurs. PHIMS hold great promise to engage lay people worldwide in health promoting
behaviors and full realization of the benefits of contemporary health care.
1
Acknowledgement
The research reported here was sponsored in part by the Robert Wood Johnson
Foundation Project HealthDesign, the California HealthCare Foundation and the
Moehlman Bascom Fund, UW-Madison. Previous versions of this work were presented
at the American Medical Informatics Association. The input and comments of Steve
Downs, Gail Casper & Veenu Aulakh are gratefully acknowledged.
References
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Aetna’s PHR. Retrieved from http://www.aetna.com/showcase/phr/
Cimino, J. J., Patel, V. L. & Kushniruk, A. W. (2002). The patient clinical information system (PatCIS):
technical solutions for and experience with giving patients access to their electronic medical records.
International Journal of Medical Informatics, 68(1-3), 113-27.
Connecting for Health (2003). The Personal Health Working Group Final Report. Markle Foundation.
Retrieved from http://www.connectingforhealth.org/resources/final_phwg_report1.pdf
Cronin, C. (2006). Personal health records: What is available to the public? Retrieved from
http://www.aarp.org/research/ppi/health-care/health-qual/articles/2006_11_phr.html
Fischbach, R. L., Sionelo-Bayog, A., Needle, A. & Delbanco, T. L. (1980). The patient and practitioner as
co-authors of the medical record. Patient Counseling and Health Education, 2(1), 1-5.
Giglio, R., Spears, B., Rumpf D. & Eddy, N. (1978). Encouraging behavior changes by use of client-held
health records. Medical Care, 16(9), 757-64.
40
Lubic, R. W. (1975). Developing maternity services women will trust. American Journal of Nursing,
75(10),1685-8, 1714
Moen, A. & Brennan, P. F. (2005). Health@Home: The work of Health Information Management in the
Household (HIMH) – Implications for Consumer Health Informatics (CHI). Journal of the American Medical
Informatics Association. 12(6), 648-56.
O'Flaherty, S., Jandera, E., Llewellyn, J. & Wall, M. (1987). Personal health records: an evaluation. Archives
of Disease in Childhood, 62(11), 1152-5.
Simons, W. W., Mandl, K. D. & Kohane, I. S. (2005). The PING personally controlled electronic medical
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Definition, benefits, and strategies for overcoming barriers to adoption. Journal of the American Medical
Informatics Association, 13(1) 121-126.
Weingart, S. N., Rind, D., Tofias, Z. & Sands, D. Z. (2006). Who uses the patient internet portal? The
PatientSite experience. Journal of the American Medical Informatics Association, 13(1), 91-95
41
Usability Considerations for
Suzanne BAKKEN a, Carme ESPINOSA b, Kathy JOHNSON c and Lynn NAGLEd
a
School of Nursing and Department of Biomedical Informatics, Columbia University,
New York, USA
b
University Ramon Llull. Barcelona, Spain
c
School of Nursing, University of Wisconsin-Madison, Madison, WI, USA
d
Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Canada
Introduction
There has been minimal emphasis on usability considerations for personal health
information management systems (PHIMS) despite decades of research and theoretical
model development that have linked usability with acceptance and use of technology, in
general, and in health care (Davis, 1989; DeLone & McLean, 2003; Venkatesh, Morris,
Davis, & Davis, 2003). Only few studies have applied usability testing methods in
consumer-oriented application domains such as a text summarization system
(Kushniruk et al., 2002), online health information searching and appraisal (Eysenbach
& Kohnler, 2002), telemedicine for case management of elderly patients with diabetes
(Kaufman et al., 2009), smartphone for diabetes self-help (Arsand, Olsen, Varmedal,
Mortensen, & Hartvigsen, 2008), and smart home features for older adults (Demiris et
al., 2006). Several authors (Arsand & Demiris, 2008; Kushniruk & Patel, 2004) have
emphasized the need for application of user-centered usability approaches to systems
designed for direct use by consumers or patients.
The overarching premise of this paper is that there is a critical need for usable tools that
support high-priority tasks for personal health information management. In this paper,
we present a model for framing usability for PHIMS, identify key issues related to
usability of PHIMS, describe two scenarios of PHIMS use, propose a set of
foundational principles for usable PHIMS, and provide a brief overview of methods for
assessing and enhancing usability for PHIMS.
Framing Usability for Personal Health Information Management
Usability has been defined by multiple authors; some definitions focus primarily on the
ease of use of a particular product or system while others also take effectiveness or
usefulness into account. For this paper, we use the International Standards Organization
(ISO) definition which states that "Usability is the effectiveness, efficiency and
satisfaction with which specific users can achieve a specific set of tasks in a particular
environment (Schoeffel, 2003) (p. 6)." This definition is consistent with an earlier model
by Bennett (Figure 1) which illustrates the relationship between user, task, and tool in
an environment (Bennett, 1984). The ISO definition and Bennett’s model highlight the
fact that usability of a particular tool may vary across users, tasks, and environments.
42
Figure 14. Bennett’s model of usability
User
Tool
Task
Environment
Figure 1 - Bennett’s Usability Model (Bennett, 1984)
During our brainstorming sessions, we created a framework to help use organize our
thinking regarding usability in the context of PHIMS (Figure 2) and guide our
development of foundation principles for usability. The core of the model is a set of user
goals that generate associated tasks in order to achieve particular health outcomes. Task
completion is facilitated by various data sources, a common technical architecture, and
tools with specific features and functions in the context of an environment.
ENVIRONMENT
Figure 2 - Framing Usability for Personal Health Information Management
43
Key Issues Related to Usability of PHIMS
Key issues related to usability of PHIMS can be considered according to the four
components in Bennett’s model: user, task, tool, and environment.
User
A number of user characteristics influence usability. These include having the mental
and physical abilities to use a particular tool or system. Levels of health literacy,
functional literacy, numeracy, and competency with information technology also
influence the extent to which a tool is considerable usable for a particular task and user
(Ancker & Kaufman, 2007; Chang et al., 2004; Gerber et al., 2005). Age (Czaja & Lee,
2003) and culture (Moen, Gregory, & Brennan, 2007) also affect usability and must be
considered in design decisions. A key issue that must be addressed is identification of
the perceived value and benefit to the multiple users who may have different tasks to
achieve. For instance, the PHIMS may be perceived as directly beneficial for managing
one’s own care or supporting care done on the user’s behalf (e.g., clinician use). On the
other hand, patients or consumers and their families may not perceive as valuable
secondary uses of PHIMS data for quality assurance, clinical research, and comparative
effectiveness research since no direct benefit is apparent.
In a recent systematic review that focused on patient acceptance of consumer health
information technology (CHIT), Or and Karsh (2009) found that only seven of 52
studies addressed usability factors in spite of strong evidence showing that perceived
ease of use and usefulness predict acceptance of CHIT. They concluded that future
research is needed to address human-technology interaction variables in this application
area.
Task
Despite strong theoretical and empirical linkages regarding the importance of
technology-task fit (Goodhue & Thompson, 1995), there has been little research about
personal health information management tasks. One notable exception is a study by
Moen and Brennan that examined the manner in which health information management
occurred in the household (Moen & Brennan, 2005). A clear understanding of the tasks
of personal health information management is a necessary prerequisite for usable
PHIMS thus it is important to apply task analysis techniques to inform user-centered
design.
Tool
Conceptualization and design of PHIMS must evolve beyond existing tools such as
personal health records (PHRs) and patient portals which are frequently based upon
electronic health record data and models. While such models meet many needs (Tang &
Lee, 2009), they are likely insufficient for self-management tasks across health
promotion, disease prevention, and illness care. Moreover, they may not meet the needs
of adolescents and young adults who are more accustomed to social networking
approaches and platforms (i.e., Web 2.0) than more traditional web-based platforms.
44
There are relatively few reports of user-centered design in proportion to the rapidly
increasing number of PHIMS. User-centered design is critical to the achievement of
usable PHIMS (Arsand & Demiris, 2008; Kushniruk & Patel, 2004). Consequently, it is
important to incorporate methods such as those specified in Table 1 as part of the
iterative system development life cycle.
Table 1 - Methods for Assessing and Enhancing Usability
Primary Purpose
Methods
User Analysis – characterize intended users in terms
of demographic characteristics, computer literacy,
familiarity with domain
Survey, interview, observation, personas
Environmental Analysis – specify physical and
sociocultural environments in which system use is to
occur
Observation, interview, focus group
Task Analysis – identify user goals and how system
should support achievement of goals
Survey, interview, laboratory study, field study
Representational Analysis – identify external
representation that best supports user tasks
Low-fidelity prototyping, user sketching exercise
Heuristic Evaluation – identify heuristic violations in
prototype user interface through expert inspection
Survey, think aloud protocol
Comparison of Designer and User Mental Models –
discover mismatches between mental models of
designer and users
Comparison of designer and user times for
completing scenario-based tasks such as keystrokes,
clicking, thinking; cognitive walkthrough by analyst
(including identification of goals, sub-goals, system
responses, and potential problems) and comparison of
user behavior with analyst behavior
Small-scale Laboratory Study – determine if system
performs as desired in controlled environment
Think aloud protocol, survey (may include behavioral
intent to use), interview
Pilot Study – determine if system performs as desired
in realistic environment
Observation, log file analysis
Satisfaction – assess user perceptions of system ease
of use and usefulness
Survey, interview, focus group
Environment
Physical environmental factors (e.g., noise, light) can positively or negatively influence
individuals’ abilities to use technologies such as PHIMS effectively and efficiently (Or
& Karsh, 2009). Other environmental factors such beliefs and values of a community or
group may also affect the extent to which PHIMS are considered usable. For instance, in
a culture in which the clinician is expected to take all responsibility for an individual’s
health, patients may not perceive PHIMS as useful tools. Other environmental
challenges are those related to a lack of clear governance structure, support for
sustainability, and confidence in the security of the information contained in PHIMS.
45
User Scenarios
Two user scenarios (below) illustrate a future vision of PHIMS functionality and
motivate the foundational principles for usable PHIMS described in the next section.
1. Sandwiched Mom
Katharine is a 50 year old single working mother of two children (Andrew and Sarah).
Her mother, Margaret, lives nearby. Other family details include:
Son Andrew is 18, and is going off to college in distant state
o Has asthma which has been typically well-controlled
o Albuterol inhaler as needed and rescue medications prn
Daughter Sarah is 15 years old, beginning high school
o Going to sport camp
o History of right knee injury related to playing soccer
Mother Margaret is 80; lives alone in two-story large old house with large
yard
o Enjoys gardening
o History of hypertension – Norvasc & Hydrodiuril twice daily
o Recent fall on ice this past winter but no fracture
o Recent death of spouse with subsequent depression,
sleeplessness, loss of appetite and weight loss
o Nurse practitioner (NP) recently recommended the installation of
sensor devices to monitor activity and assess potential for falls.
Katharine has full access to her 15-year old daughter’s PHIMS, has been granted full
access to her mother’s PHIMS, and has partial access to son’s PHIMS. This morning
she received a text message from the nurse practitioner indicating that she would like to
have a chat about sensor alerts received regarding mother’s movement around her
home.
Three (non-disruptive) reminders have been posted at Katharine’s health dashboard: 1)
schedule immunizations for daughter, 2) authorize release of son’s immunization
records, and 3) schedule colonoscopy per guidelines as warranted by a positive family
health history. In this scenario, the key users are the individual (i.e., Katharine), family
members, and clinicians. Possible health-related tasks for Katharine and her family are
listed below.
Possible Tasks for Katharine
Arrange videochat with NP regarding sensor alerts via secure messaging
Check Margaret’s medication monitoring box remotely to see if medications
removed as expected
Authorize general practitioner (GP) to grant access to son’s health history,
including recent pulmonary function tests, to new GP, pending son’s
agreement.
Order a refill of Andrew’s asthma control medications.
Review prescription refill records for Andrew’s rescue medications (notes that
these are being refilled with increasing frequency); send secure message to GP.
46
Search for free immunization clinic being held in the area.
Search and compare clinician ratings/prices for colonoscopies or schedules
with hospital per clinician recommendation.
Possible Tasks for Andrew
Andrew has already negotiated with his mother the areas of the PHIMS that
will have shared access (e.g. ability to see medications used and order refills).
Today he authorizes the future release of information from GP
Link the GPS application on cell phone to pollen count in order to graph the
time of day he should schedule his run
Synchronize his rescue inhaler to software application that records amount of
medication, time and ambient pollen count
Send a text message to “The Vault”, a private area to record personal
reflection, experiences, and stories.
Possible Tasks for Sarah
Upload the data from the pedometer on her shoe and graph her progress with
an application that links her data with her friends’ in friendly competition for a
“walk around the world”
Respond to a text message from “The Vault” asking for a short reflection on
“My Proudest Moment” by creating a photo collage and adding a short
narrative.
Possible tasks for Margaret
Play a few rounds of sudoku on the computer (for mental stimulation and
maintenance of function)
Record personal reflections in electronic diary
Participate in a discussion board for those who have recently lost a spouse.
This user scenario illustrates the seamless integration of multiple data sources, formats,
and technologies including sensor devices (pedometer, smart home devices), GPS, text
messages, gaming data, existing electronic health record, community service kiosk,
pharmacy refill records, medication vehicle (inhaler), and personal reflection narratives.
2. Data Mining Nurse
In 2009, national statistics demonstrated a significant escalation in the incidence of
Type II diabetes. One culturally-diverse region had a particularly high rate which was
continuing to increase annually within a population of 1.5 million citizens. The Ministry
of Health provided funding to five nurse practitioner-led primary care clinics to
implement an electronic solution to address this situation. The research team
representing each of the clinics identified five PHIMS modules that could be used to
monitor and understand the self-management and the experience of Type II diabetes
patients with in the region:
Culturally-appropriate, age-sensitive educational modules (system log files
automatically capture use of the modules in order to calculate an educational
intervention “dose”)
47
Dietary intake monitoring
Weight and BP monitoring
Continuous blood glucose and HbA1c monitoring
Experiential narratives.
Every diabetic patient within each of the clinics was asked to incorporate these modules
into their PHIMS and consent to participation in the research. The study was designed
to monitor all participating patients for a one year period. Regardless of data source or
structure, all data are stored in a common clinical data warehouse.
In this scenario, the tasks are described from the perspective of the nurse researcher thus
illustrating secondary rather than primary use of PHIMS data. Researcher tasks include
extraction and linkage of data from various sources (e.g., electronic health record,
scheduling system, laboratory system, medical devices [weight, BP, blood glucose], and
patient narratives) that populate the data warehouse and subsequently anonymisation
prior to data analysis. The researcher may wish to apply a natural language processing
tool to extract and encode data from the patient experiential narratives. Other researcher
tasks include calculations (e.g., dietary intake, education “dose”) and application of a
variety of data mining algorithms.
Foundational Principles for Usable PHIMS
We generated twelve foundational principles for usable PHIMS (Box 1, below) based
upon our knowledge of the literature, personal expertise, brainstorming sessions, and the
model and user scenarios that we developed. The principles address breadth of content
and users as well as features and functions.
Methods for Assessing and Enhancing Usability
A number of authors have highlighted the importance of assessing usability throughout
the system development life cycle and proposed triangulation of methods to maximize
what is learned (Arsand & Demiris, 2008; Jaspers, 2009; Johnson, Johnson, & Zhang,
2005; Kushniruk & Patel, 2004; Wilson, 2006). Kusniruk and Patel (2004) note that
cognitive and usability engineering approaches typically encompass four aspects: 1)
characterizing the ease with which a user carries out a task using the system; 2)
assessing how users attain mastery in using the system; 3) assessing system effects on
work flow; and 4) identifying user-system interaction problems. Table 1 above provides
a brief overview of the major approaches for assessing and enhancing usability. A more
detailed review of methodological approaches is given by several authors including
Kusniruk and Patel (2004), Johnson et al. (2005), and Jaspers (2009). Not all methods
have been specifically reported in regards to PHIMS. However, several authors have
demonstrated methodological triangulation across the system life cycle for consumeroriented systems that may serve as examples for others. Three illustrations follow.
Ruland et al. (2007) and Ruland, Starren, & Vatne (2008) engaged healthy and ill
children at different stages in the development of SISOM, a support system for children
with cancer that elicits symptoms/problems in a child-friendly, age-adjusted manner.
Children without cancer contributed to: the graphical design of the system's interface;
48
selection of understandable, child-friendly terms used in the system; and iconic and
graphical representations through the use of scenarios and role playing. Children with
cancer performed usability tests of SISOM using a think aloud protocol in the hospital
setting.
Lai and colleagues published a series of studies about the development of a web-based
system for management of depressive symptoms in persons living with HIV/AIDS
(PLWH) that included: 1) focus group with caseworkers (Lai & Bakken, 2006a) to
discuss mental health needs and physical and sociocultural environment of potential
system use by PLWH; 2) heuristic evaluation (survey and think aloud protocol) with
usability experts to detect usability principle violations in prototype user interface (Lai
& Bakken, 2006b); and 3) laboratory study with PLWH (think aloud protocol and
survey) (Lai, Larson, Rockoff, & Bakken, 2008). Arsand and Demiris ((2008) and
Arsand et al., (2008) described a longitudinal process in which persons with and without
diabetes participated in the design of a mobile tool for supporting lifestyle changes (e.g.,
physical activity, nutrition) among people with Type 2 diabetes. Methods included
focus groups, paper prototyping and sketching, questionnaires, and participant
homework between the focus group sessions.
Box 1 - Foundational Principles for Usable PHIMS
1.
Intentionally target content, features, and functions to health goals and outcomes
2.
Encompass disease prevention, health promotion, and illness care across the life span
3.
Support primary (individual, family, clinicians) and secondary users (payors, system planners,
public health, quality management, researchers, social services)
4.
Accessible by users with of different ages with varying levels of health and computer literacy,
cognitive and physical ability, and different cultural backgrounds
5.
Visualize and integrate data and information (user configurability) according to user needs (e.g.,
age, physical ability, cognitive ability, literacy level) and preferences (e.g., push vs. pull) in a
manner that provides cognitive support
6.
Support user learnability and memorability
7.
Include user involvement from requirements specification to evaluation in a manner consistent
with user-centered design
8.
Integrate data information, and knowledge sources and data types (e.g., coded, unstructured text,
voice, video, sensor, environmental data) including those reflective of the patient's interpretation of
their experience
9.
Represent data, information, and knowledge in a manner that is executable and actionable where
appropriate
10. Display multiple data sources and types on a variety of information and communication
technologies
11. Integrate current and evolving healthcare standards
12. Assure private and secure communication, including management of identities, roles, and
permissions, and support for audit trails
49
Conclusions
With notable exceptions, there has been little attention in the published literature to
usability considerations of PHIMS. The twelve foundational principles that we
generated provide guidance for developing usable PHIMS and can form the basis of an
assessment of PHIMS. Application of user-centered design principles and triangulation
of usability assessments across types of users, methods, settings, and phases of the
system development life cycle will enhance the usability of PHIMS.
References
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Arsand, E., & Demiris, G. (2008). User-centered methods for designing patient-centric self-help tools.
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Arsand, E., Olsen, O. A., Varmedal, R., Mortensen, W., & Hartvigsen, G. (2008). A system for monitoring
physical activity data among people with type 2 diabetes. Studies in Health Technology and Informatics, 136,
113-118.
Bennett, J. (1984). Visual display terminals: Usability issues and health concerns. Englewood Cliffs, NJ:
Prentice-Hall.
Chang, B. L., Bakken, S., Brown, S. S., Houston, T. K., Kreps, G. L., Kukafka, R., et al. (2004). Bridging the
digital divide: Reaching vulnerable populations. Journal of the American Medical Informatics Association,
11(6), 448-457.
Czaja, S. J., & Lee, C. C. (2003). Designing computer systems for older adults. In J. A. Jacko & A. Searls
(Eds.), The human-computer interaction handbook. Mahwah, NJ: Erlbaum.
Davis, F. D. (1989). Perceived usefulness, perceived ease of use, and user acceptance of information
technology. MIS Quarterly, 13(3), 319-340.
DeLone, W. H., & McLean, E. R. (2003). The DeLone and McLean model of information systems success: A
ten-year update. Journal of Management Information Systems, 19(4), 9-30.
Demiris, G., Skubic, M., Rantz, M. J., Courtney, K. L., Aud, M. A., Tyrer, H. W., et al. (2006). Facilitating
interdisciplinary design specification of "smart" homes for aging in place. Studies in Health Technology and
Informatics, 124, 45-50.
Eysenbach, G., & Kohnler, C. (2002). How do consumers search for and appraise health information on the
world wide web? Qualitative study using focus groups, usability tests, and in-depth interviews. BMJ, 324,
573-577.
Gerber, B. S., Brodsky, I. G., Lawless, K. A., Smolin, L. I., Arozullah, A. M., Smith, E. V., et al. (2005).
Implementation and evaluation of a low-literacy diabetes education computer multimedia application.
Diabetes Care, 28(7), 1574-1580.
Goodhue, D. L., & Thompson, R. L. (1995). Task-technology fit and individual performance. MIS Quarterly,
19(2), 213-236.
Jaspers, M. W. (2009). A comparison of usability methods for testing interactive health technologies:
Methodological aspects and empirical evidence. International Journal of Medical Informatics, 78(5), 340-353.
50
Johnson, C. M., Johnson, T. R., & Zhang, J. (2005). A user-centered framework for redesigning health care
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Kushniruk, A. W., Kan, M. Y., McKeown, K., Klavans, J., Jordan, D., LaFlamme, M., et al. (2002). Usability
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Medical Informatics Association, 12(6), 648-656.
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technology. Journal of the American Medical Informatics Association, 16(4), 550-560.
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51
Technical and Infrastructure Requirements
for Personal Health Information Management Systems
William GOOSSENa, Anne CASEYb, Kristiina JUNTTILAc,
Susan NEWBOLDd and Hyeoun-Ae PARKe
a
ICT innovations in healthcare at Windesheim, and Results 4 Care, the Netherlands
b
c
Hospital District of Helsinki and Uusimaa, Helsinki, Finland
d
Vanderbilt University, Nashville, TN, USA
e
College of Nursing, Seoul National University, Korea
Introduction
Technical infrastructure, tools and standards for personal health information
management systems (PHIMS) are essential for achieving their use by persons so that
they can achieve their health goals. This chapter discusses how the requirements for
PHIMS determine the infrastructure, tools and standards that are necessary, and vice
versa: how the existing infrastructure, tools and standards will influence PHIMS. The
goals of the chapter are to:
•
•
•
•
•
identify high level consumer requirements of PHIMS to facilitate
understanding of the technical issues
discuss how the technology, infrastructure and tools can assist consumers in
meeting health goals, making informed decisions and influencing the
decisions of others
identify infrastructure, tools and standards that meet consumer requirements
and that can handle information access, recording, managing, viewing,
communication, controlling, reminding, prompting, alerting and more
identify responsibilities and consequences as a method for development and
use of PHIMS
suggest different assessments of PHIMS technology.
The starting point for discussion of technical aspects of PHIMS is to relate them to
consumer health goals and then to identify consumer requirements from such systems.
The different infrastructural components and tools are then described, with an overview
of the types of PHIMS systems, infrastructural demands and solutions. Standards that
are required to achieve appropriate use of these systems are discussed and a framework
provided for PHIMS assessment on three levels: individual, population and technology.
The chapter ends with recommendations for practice and research.
People’s Requirements from PHIMS
Each person, group or community will have different requirements from PHIMS,
depending on their health goals and context. These goals and requirements would often
be identified by the person, group or community person as they consider how they will
interact with health systems, providers and others in pursuit of their goals.
52
If the professional and cultural context supports the person/group/community to be a
partner in the healthcare process, these requirements may be identified as part of
nursing assessment, as the participants together identify whether and how to integrate
PHIMS into the plan of care. In other cases, the idea of PHIMS may be introduced by
the nurse so that people can consider whether and how they prefer to interact with
information and communication technologies.
Categorisation of general requirements for PHIMS is useful as a starting point for
understanding the domain and developing practice. This categorisation can be done
from a number of perspectives such as functional or usability requirements. Here we
consider general, person centred PHIMS requirements to underpin the discussion of
infrastructure and standards. These reflect the current state of knowledge about the use
of Information and Communication Technology (ICT) by healthcare consumers from
sources such as Fox and Jones (2009); many of these requirements would also apply to
a group or community.
The list of requirements for PHIMS is based on an assumption of personal health goals
that include:
being able to understand a health issue and the way it is managed
being able to make informed healthcare decisions
self management of health, well being or illness (often in partnership with
health professionals)
obtaining advice and support from others in similar situations;
being supported to remain at home / independent.
Person-centred PHIMS requirements to meet these general healthcare goals include
being able to:
1.
2.
access and download health information from trusted sources
access and download my health information that is held by providers and
others
3. organise and manage my health information so it supports me to be proactive
in managing my health / illness
4. manage a health related diary / schedule;
5. maintain a personal health record;
6. control access to and use of my health information (based on secure ID
management);
7. gather, view and make sense of data about my health status;
8. send data to provider or other about my health status, treatment variance etc;
9. communicate with providers and others, for example, to ask questions or
request appointments;
10. receive reminders, prompts, alerts and advice – including personalised health
decision support.
Specific health goals and related requirements are the starting points for integration of
information and communications technologies into health management plans, for the
person, the group or the community. Once these are identified and agreed, the
appropriate infrastructure and tools can be identified.
53
PHIMS as a Subsystem of the Care Relationship
System analysis is the separation of systems into components for further study, which
usually consists of examining the influence of one or more components on system
performance (Roemer, 1991). With respect to PHIMS, we see many interacting
components, each of which is a large system by itself. To fully understand the technical
and infrastructure requirements for PHIMS we need to be able to see what system
components are present and interact with each other. The Soft System Methodology
(SSM) is used as a guideline for this purpose (Checkland, 1984; Checkland and
Scholes, 1990).
Soft Systems Methodology
Checkland (1984) delineates human activity systems, of which PHIMS are one
example, as processes in which an ever-changing social world is continuously recreated by its members for some meaningful purposes. According to Checkland (1984),
perceived problems in human activity systems are usually ‘soft’, ill-structured
problems of the real world. He developed the SSM to be able to manage unstructured
problems. This methodology consists of a logical stream of seven stages. In a later
publication Checkland and Scholes (1990) argue that the logical stream is too often
seen as a linear process, which it definitely is not. It is possible to start the SSM in any
of the stages and to apply it in a cyclical and recurrent process. Further, additional
approaches in SSM concern problem solving, the social system, and the political
system. The cultural stream deals with the intervention, the social changes and the
power based aspects of human affairs (Checkland and Scholes, 1990). Here, we use the
logical stream as a guide for describing the relevance of PHIMS to individuals and for
the relationship of PHIMS to the infrastructural components required for their use.
Seven Stages of the SSM Logical Stream
The first stage of the SSM consists of different descriptions of the system, including
problematic areas. Since technology itself has no value but will permeate value laden
systems, introduction of new technology itself is problematic (Kunneman, 1986). In
stage two, a viewpoint or, better still, several viewpoints are selected from which to
further study the problem situation. Here the structure, the process and their
relationships are displayed so that a range of possible and relevant choices can be
revealed.
Stage three consists of a ‘root’ definition: a concise description of a human activity
system. Root definitions can be considered as hypotheses concerning the eventual
improvement of the problem situation by means of implemented changes. The core of a
root definition is a transformation process, the means by which defined inputs are
transformed into defined outputs. We can relate that to PHIMS when we discuss the
need for PHIMS that meet consumer requirements (inputs), and determine an
implementation strategy to achieve this (outputs). Further components of root
definitions are: the owner of a problem; actors that carry out the system’s activities;
customers or stakeholders affected by the system; in the PHIMS context, the
infrastructural constraints; and finally, a series of ‘Weltanschaungen’: outlooks,
frameworks or images which make this particular root definition meaningful.
54
Stage four answers the following question: What activities, in what sequence, must be
done to do the transfer i.e. to achieve the required technical infrastructure? The system
is seen as an entity, which receives some inputs and produces some outputs; the system
itself transforms the inputs into the outputs. This stage is usually represented in
conceptual models.
In stage five the problem situations, as expressed in stage two, are examined alongside
the conceptual models to generate debate about possible changes to improve the
problem situation: desirability and feasibility are the core issues here. During stage six,
after several iterations and improvement of inadequacies in the initial analysis or root
definitions, the discussion moves to possible changes. Three kinds of changes are
possible: in structures, in processes and in attitudes. Also, the proposed changes must
be desirable with respect to solving the problem situation, and feasible with respect to
its acceptance in the culture of the system. Finally, in the seventh stage the proposed
and accepted changes are implemented and evaluated.
Subsystems that serve systems
According to Checkland (1984), it is possible to identify subsystems in a particular
system that are systems in their own right. These subsystems may again have subsubsystems. However, if system B serves the purpose of system A, then it is not
possible to form a root definition and conceptual model of B without first doing so for
A. In the context of PHIMS, the relationship between the person and/or family and
health care providers are considered to make up the root system. Human beings have
needs with respect to their health, and there are professionals who can help them
improve their health status.
Thus, this person-to-person relationship serves as system A according to Checkland’s
methodology. Then, the health system at large is a system that serves the purpose of
health care delivery to individuals (system B). Since we are not looking at health care
itself, but at PHIMS, these technologies must be defined as subsystems of A and of B.
Further, we need to make a distinction in the kind of technology a consumer wishes to
use to achieve his or her personal health goals (system C), and the information for
personal health that is available and used in health care at large (system D). Note that
system D here refers to PHIMS for particular patient populations.
We now have four interrelated systems: health goals and actions taken to achieve them
defined as a human activity at individual level; support for achieving goals with
PHIMS in whatever fashion for that person; the health care delivery system addressing
the individuals goals and actions; and the PHIMS infrastructure supporting both the
individuals PHIMS and health care delivery models.
This is illustrated in Table 1 below, and should be read to mean that subsystems B, C
and D all serve (the many million instances of) system A.
55
Table 1 - Four identified human activity systems in health care that are relevant to this
discussion with respect to PHIMS.
Health care
Technology
Individual level
A
Individual health & care
C
PHIMS for the individual
Group or Aggregate level
B
Health care
delivery system
D
PHIMS infrastructure
and technology
Discussion
Viewing PHIMS as a subsystem of individual health care helps to place it in the right
perspective. At present, this subsystem is not a very controlled environment and an
individual might choose to use a practical, but perhaps less safe system. Once the
PHIMS begin to interact with the electronic health record (EHR) held by the health
care provider organisation and with other health care systems, additional regulations
and methods come into place making the environment more controlled. A
comprehensive PHIMS infrastructure and technology needs to become available in
order to have secure and interoperable systems that meet requirements and adhere to
established standards.
Infrastructure and Tools
There are three main approaches to PHIMS (Tang et al, 2006; Miller et al, 2009). The
first approach is a freely available software package on a stand alone machine. This
requires manual maintenance, manual data entry and manual data management. Miller
et al (2009) argue that stand alone versions can support data entry by the consumer,
have separate log in for staff, and are not integrated or only partial integrated with an
EHR.
The second approach is dedicated web-based health records like Google Health or
Microsoft Health Vault among others. An individual has to do his own data
management, and the personal record is not connected to the provider EHR. This kind
of system is independent of location and machine, and is accessible where there is an
internet connection. The third option is that the PHIMS functionality is provided by
allowing individuals to view their own health data in the EHR managed by the health
professionals. There are multiple technical options for this approach but all are under
control of the professional.
Infrastructure Requirements for PHIMS
The International Standards Organisation (ISO) is working on a standard for the
personal health record (PHR), a major aspect of PHIMS. Five axes for classification of
PHRs are currently proposed as listed below.
56
Five axes for classification of personal health records are:
1.
2.
3.
4.
5.
the scope of the information in the PHR
access control,
custodianship of data,
audit of the repository and access, and
interoperability with provider EHRs (ISO, 2009).
The work on this international standard was commenced at the end of 2009 so cannot
be presented here. However, we can give an overview of functions or areas of concern
to PHIMS and how they serve the needs of individuals, based on an understanding of
the technology in current use. An example is the conceptual model of technical
requirements has been developed by the Healthcare Information and Management
Systems Society (HIMSS) personal health records (PHR) technical work group (2009).
This model is comprised of: security and privacy, standards, interoperablility, data
integration, system architecture, reporting, and technical support. Recognising that
PHIMS is a concept in development, we provide here an initial set of 11 draft
requirements for the technological infrastructure that is needed to realise people’s
health goals.
A first requirement for the infrastructure is a means for managing a person’s health
related data. This can be any data, for example, about vaccinations, medications,
diseases and treatments in the past, test results and so on. Beside this traditional disease
related information, more health oriented data can also be managed. For example,
about self management of conditions including weight control, blood sugar levels and
so on. We are beginning to see individuals managing more health related information,
for example, keeping exercise diaries and using images, graphs, tables and other
formats to identify progress and manage their personal goals. Even in these early days
of PHIMS, we do not see any restrictions on the information that can or could be
handled in PHRs, particularly when free text fields are available. So the first
requirement is that PHIMS can support management of any kind and any amount of
information.
A second core requirement for the infrastructure is the management of identities. The
person needs to be securely identified as the right individual about whom data are
entered and managed in a PHIMS. A simple username and password protection system
might not be sufficient. Some countries have experimented with health cards that allow
greater levels of security. Authentication measures may also be needed so that the
professional can be certain that a person is indeed who he or she says he or she is
before setting up access. In the same area of concern is access control of others. This
third requirement relates to PHIMS by significant others such as parents for their young
children, or the child or spouse of an older person. It includes access by professionals
and other caregivers: can their identity be authenticated, and can their authorization and
credentials be checked? Both organisational and technical measures are required,
including recording of professionals and their credentials in national professional
registries and licence systems. Technical measures include setting up of authorisation
profiles, the use of access cards with encrypted information, and password / pin code
protection.
57
A fourth area of concern is the custodianship of data. Depending on whether the system
is stand alone, internet based or EHR linked, the custodian might be different. The
person will have ownership of his or her stand alone system. Those offering internet
based PHIMS need to take care of the data and allow access to the individual but what
happens in case of the system going down, or discontinuation of such a system? A
specific requirement here is for measures that allow downloading of the information in
a structured format in case of discontinuation. Further, timely informing clients of such
events should be part of the legal infrastructure guiding PHIMS.
A fifth requirement is for an audit trail of the data repository, in particular the logging
of access and the entry, use, deletion and communication of data. Such audit trails help
detect any unwanted activity so that appropriate action can be taken. Next, is the use of
data standards and terminologies which are required to support interoperability and
communication between PHIMS and other systems, particularly data exchange with
EHRs. Electronic communication between the individual and the health provider will
depend on the type of systems used. There are a number of data exchange standards
available such as those published by the Health Level 7 (HL7) standards organisation
(www.hl7.org). Additional communications can be developed with medical devices.
For example, the automatic retrieval of a blood glucose value from a blood glucose
meter into the PHIMS (and EHR) and downloading of blood pressure recordings from
a blood pressure meter are currently possible provided both systems adhere to the same
standard. This issue of interoperability is further discussed in the section on standards
below.
Area 7 is about the architecture of health care ICT into which PHIMS must fit. A multimodal approach seems required to allow for a diversity of developments. In addition, a
multiple platform infrastructure seems necessary, in particular if the PHIMS and EHR
are not internet based. The whole architecture for PHIMS depends on linkages of many
tools, gadgets and systems – it is only by applying the appropriate standards that
integration of data from different sources can be achieved. Area 8 concerns the use of
data by the individual for monitoring, assessing and perhaps even controlling health.
When different data are combined, the PHIMS can support decisions from reminding
about appointments or prompting to take a pill, to alerting about a too high or too low
value of blood glucose. Such functionality requires careful testing and risk
management as it could introduce new safety risks or potential for error. The PHIMS
should help the person to manage his or her health information in order to support
proactive self management (in time, fitted to the person’s behavior and habits). A
question that is yet to be addressed in relation to the use of data from PHIMS is
whether health care and other organisations should be allowed to obtain data from
PHIMS for aggregate purposes such as quality assurance and health statistics.
Area 9 deals with the communication infrastructure, particularly the spread of
broadband, cellular access, or other upcoming technologies. Does the individual who
wants to use a PHIMS have sufficient access to such an infrastructure? Is it available
and is it affordable? Choosing a PHIMS supplier is part of this requirement area.
Allowing individuals to choose their own, versus have them use a required
infrastructure will have impact on vendors that have to conform to communication and
safety and risk standards.
58
Area 10 relates to the financing and/or costs for PHIMS. Is PHIMS functionality
something a professional should request from the vendor to be included in the EHR?
Does an individual have to pay for it, or is the health insurance paying because it saves
in the long run? Due to cost factors, individuals, consumer groups or professional
groups may decide to create their own PHIMS, use a commercial supplier or a PHIMS
offered by a healthcare provider, insurer, or employer. Each of these options can
include a free versus a paid system with varying risks including the availability of long
term support, disengagements, moving between jobs, vendor going out of business, and
so on. Finally, area 11 is the requirement for a social-legal-ethical infrastructure to be
in place in order to ensure a safe and interoperable infrastructure and measures in case
of violations.
It is apparent from this draft set of requirements that the infrastructure must
accommodate the wishes of clients for PHIMS use. Depending on the type of system
they choose, different areas of concern and both organisational and technical
infrastructures come into the picture and require different operationalisation.
Standards to Support PHIMS
The standards required to support safe, effective use of PHIMS are the same regardless
of the PHR or EHR model: stand-alone, web-based, provider-based, payor-based or
employer-based models. They include:
PHIMS functionality
behavioural (Practice) standard & Process (work flow) standard
information modelling and data standards
terminology standard including consumer terminology
technological standards including infrastructure, identity, confidentiality,
security and privacy oriented technologies
access control standards.
Even though there is increasing interest in PHIMS among governments, healthcare
insurance plans, vendors and providers, consumers, and other organisations, there is no
consistency in capabilities or approaches. Thus, it is important to align with standards
to achieve interoperability between approaches and various components or elements of
the PHIMS, to reduce risks of inappropriate or unlawful access or threats to data
security, to increase adoption and decrease associated cost. In this section, we introduce
examples of standards that are required with rationale and resources for each standard.
Examples of Standards
A standard for PHIMS functionality defines the set of functions that may be present in
PHIMS to create and manage an effective PHR. It also offers guidelines that facilitate
health information exchange among different PHIMS and between PHR and EHR
systems according to other standards. Examples of standards for the PHIMS
functionally include the HL7 Personal Health Record System Functional Model (PHRSFM) and the ISO standard for PHR in development mentioned above. Practice
standards are important to guide normal practice in a particular situation and to help
clinicians to integrate PHIMS into clinical practice.
59
They provide guidance for nurses with a framework for practice. Practice standards for
PHIMS could include guidelines for the complete personal health record in the PHIMS
environment, implementing electronic signatures, consumer-provider e-mail
communications, electronic data management, core data sets and use of voice
recognition technology. Such standards also provide the industry with practical
guidelines for areas that play an integral role in development of PHIMS.
To achieve interoperability of the data that is captured, represented and communicated
in the PHIMS, we need to represent meaning through different approaches such as
reference models, clinical data structures and clinical terminologies. Generic reference
models such as ISO 13606 Part 1, HL7 Clinical Document Architecture, HL7 Care
Record, and the openEHR Reference Model can be used to represent clinical data.
Clinical data structure definitions such as openEHR archetypes, ISO 13606 Part 2, and
HL7 Templates can be used to represent clinical information consistently. In particular,
the approaches for Detailed Clinical Models hold promise for PHIMS interoperability,
since they are more or less technology independent. All of these data standards depend
on the proper data format or type, which is available in the ISO 21090 data types
standard.
Clinical terminology such as SNOMED-Clinical Terms, LOINC and the International
Classification for Nursing Practice can be used as clinical coding schemes. Heal th
information in PHIMS needs to be understood by the people using the systems so
should be presented without technical jargon. Databases of health information should
include multiple descriptions of the same health items to accommodate users' differing
levels of comfort with medical terminology. Unfortunately, no standard on consumer
terminology is available.
Data exchange standards are needed to link and transfer between PHIMS and EHR
systems. ISO 27931: 2009 is one of ISO/HL7 standards establishing an application
protocol for electronic exchange of data in healthcare environments. Also, uniform data
standards with definitions and formats for the PHIMS are necessary to allow the free
exchange of such data between information systems
A core requirement for PHIMS is that information is accessed by the appropriate
persons for authorized use only. To help accomplish this, standards for authentication,
authorization, audit trail, violation log management and review are necessary. ISO
standards on Information Security (ISO IEC 27001: 2005) deals with access control in
general and ISO/TS 22600-2:2006 specifies privilege management and access control
in the health care environment. RFID (radio-frequency identification) and biometric
technologies such as fingerprint, iris, and voice recognition can be used for identity
management and tracking of consumers and healthcare professionals. However, unique
identifiers often carry additional information on consumers and professionals colliding
with privacy aspects. Thus it is very important to guarantee the required level of
privacy at the same time. ISO TS 22220: 2009 deals with identification of subjects of
health care; ISO TS 17090-1, 17090-2, and 17090-3 address the business requirements
of identification as well as the data needs in order to improve the confidence of health
service providers and subjects of care identification.
60
To preserve the security and privacy of personal healthcare information in the PHIMS
environment, information security management standards providing process and
controls for managing information are necessary. ISO 27001 and 27002 are among the
most specifically defined standards defining an information security management. ISO
27001 and 27002 could provide the formal approach needed for security management
in PHIMS environment. Another example of Security and Privacy standards are the
HIPAA security and privacy regulations in the USA (www.hhs.gov/ocr/hipaa/).
Discussion
In order to achieve interoperability between various components of the PHIMS, it is
important to align with standards. However, to develop a PHIMS based on standards is
not an easy task because there is no agreement yet on what a PHIMS must contain.
Also, since the available standards were not developed specifically for the PHIMS, we
can expect some issues and problems when we try to implement them into a PHIMS.
For example, the above mentioned standards might not be practical enough to use in
the PHIMS because they are too general or too broad.
We need specific standards related to functionality, behaviour, work flow, information
modelling, terminology, data, access control, identity, security and privacy for an
interoperable PHIMS. It will be important to identify which of the existing standards
can be used for the PHIMS and make sure these are properly implemented. In this
context, the ISO work to work related to PHRs is an important development.
61
Realizing the Infrastructure and the Tools for PHIMS
This section focuses on realising the appropriate infrastructure and tools that are
essential in deploying a PHMIS that supports desired health goals and individual /
population requirements. Careful planning and evaluation helps to implement a PHIMS
effectively. The ADPIE (Assess, Diagnose, Plan, Implement and Evaluate) approach is
familiar in clinical patient care and can be utilised as a strategic planning tool for a
PHIMS.
In the Assessment phase, the goals of implementing a PHIMS are defined, including
desired health goals and individual or population requirements. What purposes is the
PHIMS going to serve? What are the purposes for the individual, population,
organisation or general health policy? Will the focus be on specific population (e.g. the
elderly), disease (e.g. diabetes), care processes (e.g. reminders, alerts), health
information (e.g. portals), exchange of health data or something else? Is there external
pressure such as global trends that support the implementation of a specific PHIMS?
In the Diagnosing phase, the existing supportive or limiting forces are identified. Does
the organisational / regional / national IT-strategy support new innovations and
implementation of PHIMSs? What is the stage of organisational / regional / national
readiness, both technical and managerial? A business case approach is recommended to
prioritise, evaluate and balance between the population needs and requirements, and
effectiveness and affordability of the PHIMS. The business case includes also expected
benefits and risk assessment of the PHIMS. What are the perceived benefits and how
can they be identified and measured? What potential human, quality, technical or time
schedule related obstacles and barriers will be faced, what are their likelihood and
impacts and how can they be realised? By what means can the potential risks be
avoided?
In the Planning phase, the appropriate infrastructure with suitable tools will be
designed, developed and built up. Building up the infrastructure may include basic
issues like power supply, providing the broadband, designing websites etc. In this
phase, means like community relations and strategic networking may be useful.
In the Implementation phase the plan will be put into action by methodically
developing resources to accomplish the objectives identified in the plan. The
implementation of PHIMS needs not only human and financial resources, but also
educational and advisory support for the end-users. This support requirement needs to
be supplemented by the infrastructure itself, and the tools required to deploy it. Finally,
in the Evaluation phase, the outcomes of PHIMS need to be evaluated. Have the
expected benefits been achieved; i.e. have the health goals or individual / population
requirements been fulfilled and on what cost? Have the funds and other resources been
used efficiently? Has the infrastructure ensured the optimal use of PHIMS? Evaluation
may include a variety of measurements depending on the type of PHIMS in question.
Realising the appropriate infrastructure and tools that are essential in deploying a
PHMIS that supports desired health goals and individual / population requirements
does require a careful process of planning and evaluation. The five phases described
above are one approach that can be used for that.
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A framework for Assessment of PHIMS
Four kinds of assessments are required to support decision making about the use of
PHIMS, two that focus on the potential users of technology and two on the technology
itself. These are:
person PHIMS assessment
society / population PHIMS assessment
health technology assessment
nursing technology evaluation.
With the exception of health technology assessment, there is limited literature on these
topics and there are few tools to support assessment and evaluation in practice. The
scope of available evidence related to person and population assessment is illustrated
by, for example, Hebert et al (2002) who investigated stakeholder readiness for home
telecare diabetic support using a quality-of-care framework that addressed structure,
process and outcome. Bertera et al’s (2007) studied the readiness of an elderly minority
population to use various technologies for telecare. They found that the top five
situations in which respondents would be receptive to new technology were all related
to improving communications with a doctor or a nurse, especially when a medical
emergency occurred. In Australia, Cummings and Turner (2009) investigated the
influence of ICT on the health outcomes and experiences of patients with chronic
obstructive pulmonary disease (COPD) some of whom were supported by an ICT
symptom monitoring tool. Their findings highlighted the need to use of a variety of
methodological approaches in designing and evaluating e-health projects.
A recent systematic review of patient acceptance of health information technology
identified 94 different variables that were tested for association with acceptance (Or
and Karsh 2009). Most of the variables were related to patients themselves, for
example, their socio-demographic characteristics and previous exposure to health
technology. They found no studies that examined the impact of social and task factors
on acceptance and few that considered organisational or environmental factors.
In the Chapter on Integrating PHIMS into Clinical Practice the topic of person PHIMS
assessment is addressed; here we introduce some principles related to population
PHIMS assessment, provide a brief overview of health technology assessment and give
an example of two approaches to nursing technology evaluation.
Society / Population PHIMS assessment
A wide range of assessment activities are needed to understand how PHIMS can
contribute to sustainable support for populations’ and individuals’ health goals and
their shift toward knowledge-based decision-making on health related issues. Even
before health ICT is considered, there needs to be an understanding of the ‘e-readiness’
of the population. E-readiness is defined by the Center for International Development
(2000) as ‘the degree to which a community is prepared to participate in the networked
world’. It is measured by assessing ‘the community’s relative advancement in the areas
that are most critical for ICT adoption’. A comparison of e-readiness assessment
models and tools is available at: www.bridges.org/publication/128.
63
One example of the ways in which general e-readiness can be assessed is the Global eHealth Research and Training Program project in Pakistan (Khoja et al, 2008). Five
readiness components are used in the readiness assessment for that project:
1.
2.
3.
4.
5.
core readiness – including identification of need, dissatisfaction with the status
quo, awareness, comfort with language, and comfort with technology
cultural readiness (Access) – including speed and quality of internet, hardware
and software, internet availability and affordability, regular usage of computer
and internet
learning – measurement of the minimum required knowledge and training in
the community to use ICT
society - measurement of Internet use and interaction
policy - including ICT regulations, ethics, mandatory courses and increasing
availability (Khoja et al, 2008).
Evaluation of technical infrastructure needs to include issues such as penetration of
ICT including communication networks and devices (e.g. broadband, mobile
telephones), power supply and (global) trends. There are many sources of data for this
aspect of assessment, for example, the Organisation for Economic Cooperation and
Development (OECD). In 2007, OECD reported that average in households with access
to the Internet at home was 58 percent. The figure was highest in Korea (94 percent)
and lowest in Turkey (8 percent). Internet access is most frequent at place of work or
education in the Baltic countries whereas but in Latin America and China it is highest
in Internet Cafes. Furthermore, 45 percent or more of adults in Luxemburg, Finland,
the Netherlands, Iceland and Germany sought health information on the web. (OECD,
2008). It is clear that cultural factors are critically important in the assessment of
populations for personal health information management.
The aims of population assessment in relation to PHIMS are to:
-
understand the population readiness on a community or wider level in order to
influence infrastructural developments
support planning and implementation of PHIMS-related health/nursing
interventions for the community (or wider level)
support outcome measurement of PHIMS-related health/nursing interventions
support health monitoring and delivery of public health services to the
population
relate the wider PHIMS context to assessment and care provision for the
individual person
evaluate the progress of developments and their impact/outcomes.
Decision making in the region or country related to PHIMS will depend on resources as
well as the overall health strategy and the health IT strategy as the country reports in
this book demonstrate. Consideration of any PHIM system needs prioritizing,
evaluation and balancing between the population needs, and effectiveness and
affordability of the PHIMS. These are the elements that need to be included into a
business-case to justify the required expenditure of any PHIMS (see Figure 1 below).
64
Population needs
Evaluation
Prioritizing
Effectiveness
(outcomes)
Affordability
Balancing
Figure 1 - Linking population needs to affordability and effectiveness
Health Technology Assessment
Health technology assessment is carried out for many new technologies in healthcare.
In particular the efficacy and efficiency of new medications, treatment methods and
other technologies is investigated. Brender (2006) summarises a set of evaluation
methods that would be applicable in health informatics in general. A selection from her
methods overview would be useful in assessment of PHIMS. In particular, the
assessment is a process of performing evaluation, verification and/or validation.
Verification is the act of checking well-defined properties against its specification,
which can be done by stakeholders in PHIMS developments. Evaluation is the act of
measuring quality characteristics of a technology. For PHIMS, that would imply
evaluation of the content, technical bits and pieces and security measures, for example.
Validation is the act of comparing properties of an object with the stated goal as a
frame of reference, i.e. set of requirements. For PHIMS, that implies requirements must
be set carefully against the goals and validated in a practice situation.
Nursing technology evaluation
The purpose of nursing technology evaluation is to support decisions about whether to
integrate, or recommend integration, of a particular technology into the care of an
individual, a group or a population. In the absence of literature on this topic we have
used a framework from the Royal College of Nursing (RCN) in the UK as an example
of the type of issues that need to be addressed in this type of evaluation. The RCN’s
SAFE framework (see Box 1 below) and accompanying guidance was developed to
help nurses assess the safety and effectiveness of systems that have been or will be
introduced into a specific area of clinical practice (RCN, 2008).
65
Box 1 - Framework for nursing evaluation of health ICT systems (from RCN, 2008).
Systems and the way they are used must:
S
conform to STANDARDS
A
be ACCEPTABLE to persons using them
F
be FIT for purpose and practice
E
be supported by EVIDENCE
R
be RISK MANAGED throughout the system lifecycle
The most important component of this assessment framework is evidence. As would
happen with any other innovation in health care, the nursing team make a judgement
based on the evidence that is available about: fitness for purpose, acceptability, the
success of risk mitigation actions and whether the technology conforms to standards
(particularly safety standards). A balance must be found between, for example,
customisation for usability and standards that must be followed for electronic
communication, for safety or for legal reasons. The RCN framework is published as
guidance only; it has not been validated in practice. Nurses are accountable for the
techniques and tools they use in support of patient care and those they recommend for
people to use for self care. There is a clear need to develop, test and disseminate
practical tools to assist nurses in making decisions regarding the use of specific
technologies and in supporting people in their own decision making. Perhaps the most
important part of evaluation is risk management which begins with risk assessment.
Discussion
Nursing competence in PHIMS assessment needs to cover: person and population level
assessment as well as health and nursing technology assessment. Decision making
based on these assessments must be based on evidence of effectiveness. However,
more research is needed to validate specific assessment and outcome measures for
different clinical and cultural situations. A decision framework for integrating home
telehealth into chronic illness care published by Hebert et al in 2006 is a useful starting
point for moving from assessment data to plan and deliver interventions that will
support the person in achieving health goals.
Conclusions and Recommendations
This chapter related PHIMS to consumer health goals and identified the systems and
consumer requirements at a high abstraction level. Different infrastructural components
have been discussed, presenting overviews of types of PHIMS systems, infrastructural
demands and solutions. It is obvious that many standards are required to achieve safe
and appropriate use of PHIMS. A project phasing is required to actually develop and
implement PHIMS. The chapter finishes with an overview of assessment of health
technology on different levels: person, population, health technology assessment and
nursing technology evaluation.
66
Based on current understanding of the issues addressed in this chapter, the following
recommendations for practice and research are made:
1.
2.
3.
4.
5.
6.
7.
Detailed identification of health goals for the person, the group or the community
is a precondition for decisions about PHIMS tools and infrastructure
Those at all levels making decisions in relation to PHIMS must identify the values
that inform the decisions and the implications of their decisions related to the
rights and responsibilities of stakeholders. The analysis of PHIMS with respect to
systems and subsystems allows handling issues at the right level
Infrastructure requirements for PHIMS need to be further explored and defined;
the 11 areas considered in this chapter provide a framework for this work as does
the ISO standard for PHRs that is currently under development. Alongside
technical areas, societal infrastructure needs to be addressed, for example, legal
arrangements, payment structures and responsibilities for PHIMS
The realisation of a PHIMS requires a thorough ADPIE (Assess, Diagnose, Plan,
Implement and Evaluate) approach in order to ensure optimal outcomes
PHIMS must in principle adhere to appropriate standards: clinical practice,
workflow, data content, terminologies, and technological. In particular, measures
for identity management are required and the application of the whole set of
security and privacy protection standards.
Use of PHIMS implies consent and active engagement of the person. Where
PHIMS is part of a health delivery strategy, there must be an assessment of the
implications for those who choose not to engage or are unable to. Alternative
strategies may need to be put in place to ensure that these people are not
disadvantaged.
Research is needed to develop and validate assessment tools and outcomes
measures for person and population PHIMS assessment tools for different clinical
context and for nursing assessment and evaluation of PHIMS technology for
practice.
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68
Integrating Personal Health Information Management
Systems into Clinical Practice
Patricia C. DYKESa, Robyn COOKb, Leanne M. CURRIEc,
Satoko TSURUd and Patrick WEBERe
a
Clinical Informatics Research and Development, Partners HealthCare and Harvard
Medical School, Boston, USA
b
Sidra Medical and Research Center, Qatar Foundation, Doha, Qatar
c
School of Nursing, Columbia University, New York, NY, USA
d
School of Engineering, University of Tokyo, Tokyo, JAPAN
e
Administrator, Nice Computing, Lausanne, CH and Chair of Nursing Informatics
Europe by EFMI
Introduction
While many challenges await nurses as they assimilate technology into practice, the
potential benefits of doing so include sustainable models of care delivery that extend
limited resources and support consumers and patients globally in actively achieving
positive health outcomes. Thirty years ago, Virginia Henderson described the nursing
practice challenges associated with “preserving the essence of nursing in a
technological age” (Henderson, 1979). Henderson defined the essence of nursing as:
helping “persons, sick or well, from birth to death, with those activities of daily living
that they would perform unaided if they had the strength, the will and the knowledge”
to do so (Henderson, 1979, p. 246). The challenges that Henderson described relate to
the conflict between the humane (the art of nursing) and the technological aspects of
nursing practice (the science). Henderson’s goal was to preserve the unique function of
basic nursing care which she believed is essential to human welfare, while achieving
technological competence to enhance clinical practice.
Significant advancements in technology have occurred over the past thirty years. In
addition to the life sustaining equipment found in intensive care units that inspired
Henderson’s writing, technology is now pervasive across care settings and
communities around the world. Personal Health Information Management Systems
(PHIMs) are but one example of the ubiquitous nature of technology in the twenty-first
century. This chapter explores the challenges of integrating PHIMS into clinical
practice, recognising that, as societal demands for technological competence intensify,
the challenges associated with preserving the essence of nursing practice become more
acute. For example, the patient safety benefits related to use of electronic patient record
systems have led to demand for uptake of these systems. However, nurses may fear a
potentially dehumanizing effect of these systems on the nurse-patient relationship
(Dillon, Blankenship & Crews, 2005). This factor may be a barrier to adoption and
use. Despite such risks, technological innovation provides an opportunity to advance
sustainable models of care that promote self-management and family and community
help, rather than institutionalization and dependency.
69
Nursing care in the technological age can continue to be both an art and a science:
getting to know the patient is fundamental to understanding the degree to which
technology can be used so that its use is consistent with goals that are mutually
acceptable to those who give and receive care. Knowing the patient is also important in
terms of understanding a patient’s willingness to allow others to use PHIMs on their
behalf.
Widespread uptake of PHIMS is dependent upon integration of appropriate
applications and tools into the clinical practice of nurses across care settings and levels
of care. Perhaps even more important is the acceptance and use of PHIMS by
consumers and patients. Two major processes influence both integration and
acceptance: advocacy and workflow. These processes are closely linked to nursing
practice when managing patient health information and when using PHIMS in the
context of patient care. The significance of the nurse as patient advocate in achieving
integration of PHIMS into clinical practice through cultural transformation, the
building of mutual trust, securing data completeness, and access to PHIMS are
explored in the sections below. Following the discussion of advocacy, an analysis of
nurse, consumer and patient workflow processes are considered as a means to support
adoption and use of PHIMS along the continuum of care. The conceptual framework
for integrating PHIMS into practice is displayed in Figure 1 and elaborated in the
discussion below.
Figure 1 - Conceptual Model for Integrating PHIMS in Practice
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Advocacy
Advocacy is a key component of nursing practice across cultures and is integral to
promotion of a patient’s well being.(Vaartio & Leino-Kilpi, 2005). It is a central
element of the nurse’s efforts to promote and safeguard the well-being and interests of
patients. Advocacy involves ensuring that patients are aware of their rights and have
access to information needed to support informed decision-making (McFerran, 1998).
The integration of PHIMS into nursing practice presents new challenges to the nurse
particularly as it relates to the advocacy role. New challenges include protecting the
patient’s right to make informed decisions regardless of whether or not that decision
includes uptake and use of PHIMS applications and tools. As the penetration of PHIMS
becomes more widespread, one key challenge is familiar to those who have cared for
patients in intensive care settings (Benner, Tanner & Chesla, 1992; Cooper, 1993):
nurses have long advocated for critically ill patients by helping them to achieve a
proper balance between quality of life with or without supportive technology. While
many of the new technologies enable self management and illness prevention, rather
than life support, the role of the nurse continues to include advocating for a sense of
balance in accordance with quality of life from the patient’s perspective.
For the patient who wishes to use technology, the nurse advocates by promoting access
and by providing the education and training needed to attain competence. For patients
who choose not to use technology, the nurse may advocate by involving others (if
sanctioned by the patient) to use technology on the patient’s behalf and by tempering
the potentially dehumanizing impact of technology on patient care and dignity (Cooper,
1993). Table 1 provides examples of the role of the nurse as patient advocate relative to
PHIMS using the three core attributes of patient advocacy described by Bu and
Jezewski (2007): safeguarding patients’ autonomy; acting on behalf of patients; and
championing social justice.
Table 1 - Core Attributes of Patient Advocacy
Core Attributes of Patient Advocacy
(Bu & Jezewski, 2007)
Examples
Safeguarding autonomy
Nurse assesses patient’s readiness for adoption and use of PHIMS
and supports informed decision-making relative to patient
preferences.
Acting on behalf of patients
Homebound patient chooses not to use PHIMS, but requests that the
nurse ensures that his daughter is given access to his PHR.
Championing social justice
Nurse informatician lobbies for improved access to PHIMS and for
upholding consumer/patient-centered solutions that promote
informed decision-making and involvement in achieving positive
health outcomes.
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The concept of nurse as patient advocate cuts across practice settings and defines the
roles and responsibilities of the nurse relative to the outcomes of cultural
transformation, the building of mutual trust, securing data completeness, and access to
PHIMS, further explored below.
Cultural Transformation
Practicing nurses are in a key position to support and drive the cultural transformation
needed to advance the diffusion and uptake of PHIS and to build mutual trust between
consumers/patients, nurses and other healthcare providers. In many countries,
consumers and patients are largely passive recipients of health care. Cultural
transformation is needed before consumers will be willing to fully participate in health
care and wellness processes and accept responsibility for healthcare outcomes.
Moreover, the issues of technology adoption and diffusion of innovation must be
addressed before new technologies will be incorporated into the person’s day to day
healthcare management routines. Some of the key cultural barriers to integrating
PHIMS into clinical practice are included in Box 1.
Box 1 - Cultural barriers to integrating PHIMS into practice
Lack of patient/consumer ownership and responsibility for an individuals health status and
health care solutions
Sense of discomfort nurses and other providers may feel related to changes in the traditional
provider–patient roles brought about by integrating PHIMS into practice
Unwillingness of nurses and other providers to accept individuals ( the person) as “full fledged”
member of healthcare team
Varying levels of trust in patient/consumer ability to accurately enter information into PHIMS
Lack of appreciation for the patient perspective and the role of patient entered information with
PHIMS
Varying support within society for diffusion of innovations such as PHIMS and the rate of
adoption of technology within the society
To overcome such barriers and incorporate PHIMS into general societal behaviour
requires a change for both patients, consumers and for nurses. Actively managing this
transformation will ensure that technical innovations deliver the desired benefits while
minimizing the risks that new technologies can bring. This transformation requires
active support for the changing role of the person in managing their healthcare
outcomes. The degree of cultural transformation required is a factor of both the relative
change required in the person role in the health context and the extent to which that
society generally incorporates new technologies to support consumer/patient
participation in managing healthcare outcomes. Proposed actions to support the cultural
transformation in the context of nursing practice are addressed below based on a
combination of change management, innovation diffusion, and technology adoption
theories. Procsi’s (2009) change management model provides a framework for
planning change.
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Procsi’s model encompasses:
awareness of requirement to change
desire to participate in the change; knowledge on how to change; ability to
implement required skills and behaviours, and
reinforcement to sustain the change.
‘Diffusion of innovation’ theories such as that of Rogers (2003), provide a framework
for developing specific innovation diffusion initiatives. These theories address all
aspects of the innovation decision process theory where individuals:
require knowledge of the innovation to be convinced of the value of the
innovation
participate in activities that assist with deciding to adopt the innovation
integrate the innovation into practice, and finally
confirm the benefits of using the new innovation or technologies as a means
to reinforce adoption (Rogers, 2003).
In addition, developing initiatives that support technology adoption within the society
are required. Staub (2009) proposes an approach that acknowledges and then manages
the complexity of the technology adoption process. Therefore, initiatives are needed to
simultaneously address the social developmental processes and the individual’s
perceptions that may influence adoption and facilitate change from cognitive,
emotional and contextual perspectives.
One of the central tenets of PHIMS is that the patient/consumer is as the owner of the
health information and in that role actively contributes, analyses and acts on the
information. In this context, there is a significant shift to empower the person. This is a
major change for patients, consumers and the health professionals. Increasing
empowerment of the person, has been described by Jones and Meleis (cited by Lau,
2002, p. 372) as a “social process of recognizing, promoting and enhancing people’s
ability to meet their own needs, solve their own problems, and mobilize the necessary
resources to take care of their own lives”. While PHIMS have the potential to support
individuals in taking a more active role in health related problem-solving, to date the
patient/consumer has played a more passive role in this process. The notion of the
individual using PHIMS to mobilize resources to meet personal health and wellness
needs represents a significant shift in current thinking and practice. PHIMS is an
enabler of empowerment and can be effectively supported through the nurse advocacy
role. By utilising PHIMS, a person has control of their health information, can utilise
the information to maintain their healthcare status and outcomes.
Ultimately, PHIMS provides the tools needed to transform patient/consumer
relationships with nurses and other providers to one where the focus is the person
interacting with the health care professionals as needed to support their health and
wellness. In this context, the patient/consumer assumes a central role within the
healthcare team.
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However, cultural transformation is a process. People may exist at any point along the
continuum of this transformation and, based on their position along the continuum,
they may require varying levels of support from nurses and other providers.
Change Models and Initiatives.
Utilising the Prosci change model and aspects of Rogers’ Diffusion of Innovation
theory as a conceptual framework, potential change initiatives to support cultural
transformation for patients/consumers can be identified (Table 2, over). The second
perspective of the cultural transformation relates to the nurse. This transformation
involves incorporating PHIMS perspectives into nursing practice. Such a change will
challenge nurses to increase their understanding of PHIMS (including ongoing
advancements) and their understanding of how new technologies are accepted and
taken up in society. Samples of the change initiatives listed in table 2 highlight a
number of areas for the change in nursing practice. These initiatives require integration
into the process of life long learning for the nurse.
Nurse Informatician Role
Nurse informaticians are well placed to support cultural transformation through change
initiatives such as disseminating information on PHIMS, including the benefits and
risks of using PHIMS. Nurse informaticians can also identify the knowledge and skills
required to effectively utilize PHIMS, develop strategies for knowledge and skill
development and methods for applying PHIMS to practice. Nurse Informaticians
should look to the research on technology adoption and innovation diffusion to guide
the development of cultural transformation programs. There are a number of factors
such as patient/consumer educational level, gender, computer self efficacy, prior
experience and the degree of voluntariness of use that will impact technology
adoption.(Wu & Lederer, 2009). A working knowledge of these factors may assist in
developing effective PHIMS adoption strategies that support cultural transformation.
Top priorities for nurse informaticians related to cultural change include the following:
developing and maintaining effective communication strategies related to
PHIMS, its benefits, risks and implications for use in both personal health
management and nursing practice
applying the concepts of empowerment to the nurse advocacy role in the
context of PHIMS
developing validated PHIMS readiness assessment tools for implementation
and use in nursing practice
leveraging the knowledge from countries implementing PHIMS to support
emerging countries in their efforts to establish a successful PHIMS adoption
framework.
analysing new knowledge and skill sets required to effectively utilise PHIMS
specifically through analysing the impact on existing and emerging
workflows.
developing programs to increase knowledge and skills related to the use of
PHIMS.
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defining evaluation frameworks to demonstrate the value of PHIMS to
reinforce the benefits of PHIMS adoption.
Table 2 - Change Initiatives Related to PHIMS to Support Cultural Transformation
PERSON
NURSE
NURSE INFORMATICIAN
Overall understanding of
PHIMS including what it is, the
value and benefits of using
PHIMS, the key risks that need
to be managed and the
knowledge and skills required
to support use of PHIMS
Assist the patient/consumer to
increase awareness of PHIMS through
provision of facilitated discussions
and education on PHIMS, its benefits,
key risks and identification of
knowledge and skills required to
utilise PHIMS
Analyses PHIMS solutions to
develop education packages and
programs on PHIMS, including
benefits, risks, risk management
strategies and knowledge and skills
development required to utilise
PHIMS. Provides education to
nurses
Investigate PHIMS options and
personal requirements to utilise
PHIMS
Increased Desire to utilise PHIMS
Supports the patient/ consumer to
evaluate PHIMS options, assesses
level of readiness to adopt the PHIMS
and identify the additional skills and
behaviours required to utilise PHIMS
Provides tools to assist with
PHIMS Readiness Assessment
Increased knowledge on how to change
Develops range of educational
Supports the patient/consumer to
Explores, investigates and
materials and information on
utilise the PHIMS through
utilises aspects of PHIMS and
options for skills development
demonstration, education and
addresses personal
identification of options to address
requirements e.g., additional
skills deficits
skills development such as.
internet skills
Increased ability to implement required skills and behaviours
Provides scenarios on the effective
Supports the patient/ consumer to
Determines the level of
use of PHIMS; Monitors the
utilise the PHIMS including
utilisation of the PHIMS and
environment for changes in practice
discussing their use of PHIMS. The
commences use. Develops an
and skills for continued effective
increased knowledge of PHIMS nurse utilises PHIMS information in
and safe use of PHIMS
nursing assessments, defining nursing
and skills increase in use of
interventions and assessing outcomes.
PHIMS
Improvements in health care
status, knowledge and
outcomes provides effective
feedback on the benefits of
PHIMS
Reinforcement to sustain the change
Develops and implements research
Supports the person to review the
programs to demonstrate the value
changes in health status, knowledge
of PHIMS
and improvements in outcomes to
demonstrate the benefits of PHIMS
Whilst there are significant benefits to be gained from taking a global perspective on
these initiatives, it is also important from a cultural transformation perspective that the
initiatives are sufficiently tailored to reflect local customs, practices and norms to
ensure cross cultural adoption.
Securing Mutual Trust
Trust has been defined as “the optimistic acceptance of a vulnerable situation,
following careful assessment, in which the truster believes that the trustee has his best
interests as paramount” (Bell & Duffy, 2009, p. 50). The role of the nurse in securing
mutual trust is essential to integrating PHIMS into nursing practice.
75
Trust between the nurse and the patient contributes to the shared understanding that
PHIMS applications and tools and associated health information will be used
responsibly to support mutually agreed upon goals. Bell and Duffy (2009) identify four
attributes of trust: expectation of competence; goodwill of others;
fragility/vulnerability; and element of risk. In Table 3, these attributes of trust provide
a framework for understanding the process for development of mutual trust as it relates
to integrating PHIMS into practice.
Table 3 - Change Initiatives Related to PHIMS to Support Cultural Transformation
Expectation of
competence:
Patient has an expectation that the nurse will use PHIMS in a way that is in their
best interest and consistent with mutually agreed upon goals.
Patient has an expectation that PHIMS will meet their identified health/wellness
need.
Goodwill of others:
Patient has faith in the goodwill of the nurse. Once trust is established, the patient
hands over an element of control to the nurse.
The nurse provides education and mentoring to assist patient with learning
effective use of PHIMS to maximize wellness and to minimize power differential.
Fragility/
vulnerability:
Patient need for trust speaks to the essential vulnerability of the nurse patient
relationship.
The nurse reduces patient vulnerability by providing them with support to use
PHIMS to take responsibility for own healthcare outcomes.
Element of risk:
Trust always involves risk and the possibility that the person being trusted may
not act appropriately.
Getting to know the patient, demonstrating competence, goodwill and effective
use of PHIMS to meet mutually agreed upon goals decrease the element of risk
for the patient.
True integration of PHIMS into nursing practice requires that both patients and nurses
use PHIMS. Therefore patient trust in nurses that they will use personal health
information in a way that is safe, secure and to their benefit is essential, but nurses
must develop trust in patients as well. They must appreciate and value the patient
perspective and trust that patient-entered information is a valid source of data. In
addition, nurses must advocate for inclusion of patient-centric information in PHIMS.
While technology has been used in nursing practice for several decades, many of the
applications and tools currently available are relatively new and continuously evolving.
Educational scripts and competencies for nurses are needed to inform nurses about how
PHIMS are used including features to safeguard safety and privacy, and the risk and
benefits of use (or choosing not to use).
Data Completeness
Complete data and information are prerequisites to integration of PHIMS into practice.
Unless patients, consumers, nurses and other users believe that data are accurate and
complete, PHIMS will not be used. Nurses and other providers may have concerns
related to the consistency with which consumers and patients maintain information in
their record. Nurses are in a key position to advocate for a complete record.
76
This may be accomplished by educating consumers and patients on the importance of
accurate and complete data. Currently a minority of people maintain a complete record
of their health care practices or record complete health-related data. Due to their
proximity to the patient, nurses can play a crucial role in educating them about the
benefits of keeping a formal health record with or without PHIMS. Data should be
reviewed at the start of each visit to involve patients in updating the record and to
model the process. Nurses may also need to educate each other about patients’ ability
to accurately enter information into PHIMS and the benefits of encouraging them to do
so. Published research indicates that the validity of consumer entered information
related to their medical history is comparable or more complete than similar data
charted by providers (Porter & Mandl, 1999).
In addition to a more complete record, there is potential for improved efficiency
associated with engaging the patient in entering information into PHIMS. While nurses
must advocate for data completeness, they are also obliged to make people aware of the
potential risks associated with full disclosure. Policies are needed to protect consumers’
and patients’ ability to enter complete health information into PHIMS without fear of
discrimination or loss of benefits.
Besides education, standards are needed to facilitate data completeness. For example,
standards are needed to establish data types that will feed the PHIMS including which
data will be available for viewing and editing versus data required for re-use for
decision support and reporting purposes. Nurses may advocate for the inclusion of
consumer and patient-centric data for use in PHIMS. Nurse informaticians are needed
to define the data structures and meta data required to assure that the context related to
entered data is preserved.
Access
Nurses at the point of care are in a key position to facilitate the public’s access to
PHIMS. The International Telecommunication Union (ITU), a United Nations agency
for information and communication technologies issues, suggests that access involves
providing a method for equitable communication via the following:
accessible design: accessibility has to be built in into products and services
from the very beginning
availability: accessible products and services must be on hand to users, and
affordability: access to products and services must be reasonable (ITU, n. d.).
The World Health Organization has produced a draft recommendation on record access
stating that any user of a health service should have power to access all of their
personal health information (Fisher, Fitton & Bos, 2007). Citizens should have access
to their records to increase transparency of healthcare activities which may improve
health, to empower patients, to improve record keeping, and to benefit provision of
health services by reducing unnecessary appointments (Fisher, Fitton & Bos, 2007).
These tenets are in alignment with the 2003 declaration of World Summit on the
Information Society (WSIS) that put forth a world vision for “a people-centred,
inclusive and development oriented Information Society, where everyone can create,
77
access, utilise and share information and knowledge, enabling individuals,
communities and peoples to achieve their full potential in promoting their sustainable
development and improving their quality of life” (Jørgensen, 2005, p. 91).
One of the barriers to access is the digital divide in which there is a gap between those
who have access and those who do not have access to technologies. (Warschauer,
2003). Several factors have been implicated in the digital divide including geography,
socio-economic status, education, disability, literacy, race and language (Warschauer,
2003). It is well documented that populations with higher socioeconomic status have
better access to the Internet and to broadband services and that minorities often do not
have access to culturally relevant information (Jørgensen, 2005).
According to 2008 data from the ITU, there are on average 23 Internet users per 100
people internationally, however only 6 people per 100 are broadband users. More
importantly, the 2008 data indicate that there was very low Internet usage for countries
such as Myanmar (0.08 per 100 inhabitants), Sierra Leone (0.25 per 100 inhabitants)
and Bangladesh (0.32 per 100 inhabitants) as compared to Norway, Sweden and the
Netherlands with 84 to 86 Internet users per 100 inhabitants (ITU Statistics, 2008).
Even within developed economies such as the European Union (EU) disparities still
exist, with Bulgaria (25 per 100 inhabitants), Romania (30 per 100 inhabitants) and
Greece (31 per 100 inhabitants) having the lowest levels of usage in the EU.
Early evaluations of the digital divide focused on Internet penetration, however due to
the ease of use and general low cost of cellular telephone technologies some countries
have a very high technological penetration of cell phones compared to the Internet. For
example, in Guatemala 10 people per 100 inhabitants use the Internet, but 100 per 100
inhabitants use a cell phone (ITU statistics, 2008). Knowledge of technology usage is
important, as nurses must assess which method of communication people might use.
Disability is another important issue related to access. Several assistive technologies
can be used to support disabled persons who are much less likely to use the Internet
than their non-disabled counterparts. However, when disabled persons use the Internet,
they are more likely to seek out health information (Dobransky & Hargittai, 2006).
Dobranksy and Hargittai reported that persons who were hearing or mobility disabled
were equally as likely to use the Internet as their non-disabled counterparts, but persons
with visual disabilities or disabilities that precluded typing were much less likely to use
the Internet. The Internet Global Foundation (IGF), the arm of the United Nations that
carries out the mandate of the WSIS, has recently made the following
recommendations to governments: the IGF “Strongly urge that basic building blocks
of assistive technologies, such as Text to Speech and Speech to Text software,
Interactive Voice Command, Real time text solutions, Optical Character Recognition
software and language rule tables for Braille transcription, are developed with high
priority for all languages of all countries and licensed under an open source license, and
open standards for structured access to oral and visual knowledge to enable
development of various assistive technologies, such as screen reading software, text
reading systems, talking mobile phones, talking ATMs, and real time text alternative
communications that depend on these basic building blocks” (Dynamic Coalition on
Accessibility and Disability, 2008).
78
From a nursing practice perspective, factors related to access include the availability of
technology for the person, the person’s ability to use such systems, and the person’s
preferred mode of communication. Nurses must remain aware that it cannot be
presumed that people will receive their health education via the Internet or other
technologies. Given this, the nurse will need to examine the person’s level of readiness
to use technologies as well as the availability of technologies (if any) in the person’s
community/home. In addition, the person may have a preferred mode for receiving
communication or information. For example, in a region where there is limited Internet
access but widespread cell phone coverage, a patient may prefer to use text messaging
as the mode of communication.
As care coordinators, nurses can examine an individual’s ability to use technology,
their ability to understand health information, and their ability to implement health
recommendations and thus can ensure equitable access to all people.
Workflow
Workflow is defined as a system of transferring tangible and intangible items from one
agent to another for a purpose (Ozkaynak & Brennan, 2008). As it applies to
integration of PHIMS into clinical practice, workflow includes the context into which
the technology is introduced. Therefore, consumer, patient and nursing practice related
workflows are relevant. Research is needed to better understand consumer, patient and
nurse current and future state workflow processes and existing gaps to support
integrating PHIMS into clinical practice along the continuum of care. For example,
there is a dearth of published research to provide guidance on how these tools might be
used in the context of an acute care hospitalization to support the nursing process of
assessment, diagnosis, planning, intervention, and evaluation of care or how PHIMS
will support discharge teaching processes. Questions remain regarding how PHIMS
will be incorporated into the processes of care to support consumer and patient
education and informed decision-making.
Additional areas for research include the use of PHIMS to support patient selfmanagement of chronic illness and preventative health outside the walls of formal care
provision. As PHIMS applications and tools become more widely available, workflow
and care processes must be defined around the individual as an actor deploying a new
kind of self-management in the context of complementary professional care. Changes
in communication flows resulting from shared decision making should be examined
when introducing PHIMS. Work is needed to explore ways to make the use of PHIMS
a value added activity, rather than simply adding additional processes into already
complex workflows.
A conceptual model for integration of PHIMS into practice is displayed in Figure 1
above. The target areas for PHIMS include all sites and levels of care across the health
and wellness continuum. Integration of PHIMS into patient/consumer and clinician
workflow processes leads to continuous generation and use of personal health
information (PHI) by both persons and clinicians. Systematic review of data
completeness by nurses contributes to data integrity in repositories.
79
Ongoing review and redesign of workflows are needed to identify barriers and to
strengthen facilitators to integration and use of PHIMS by persons and clinicians. To
achieve the ideals represented in the PHIMS conceptual model, a method for analyzing
PHIMS workflow processes is needed. Complete understandings of person and
clinician workflow processes are prerequisite to efficient and effective use of PHIMS in
practice.
Applying methods from process engineering and quality improvement may provide a
useful framework for a more complete understanding of the workflow process
components associated with the use of PHIMS by both persons and clinicians,
including the following strategies:
1.
developing a more complete understanding of the workflow processes
associated with the use of PHIMS by interviewing and observing stakeholders
2.
breaking workflow processes down into components or “unit processes”
3.
reducing “unit processes” into process, resource and management
subcomponents. The process subcomponents include actual workflow
including input, output and functions of the workflow. The resources
subcomponent includes resources needed to perform the functions and the
management subcomponent includes indicators of success and supplementary
methods to be followed when issues arise
4.
mapping out the relationships between processes, subcomponents of persons
and consumers on a unit process flow chart (UPFC). The UPFC is a
standardized module that serves as a visual display of PHIMS workflow
processes that allow for in-depth analysis of barriers and facilitators to
integration of PHIMS into practice.
(Shimono, Tsuru, IIzuka, Kato, Munechika & Kaneko, 2009).
Understanding both person and clinician workflows at a micro level facilitates
modifying workflow units to improve efficiency, limit barriers and strengthen
facilitators to integration of PHIMS into practice. In Figure 2, workflow components
are analyzed at the subcomponent level. Proposed improvements are made and efficient
and effective person and clinician workflows are linked. Improved workflow processes
are diagramed using a UPFC and then tested using clinical scenarios from across
PHIMS target areas.
80
Figure 2: Iterative Approach to Component-based Testing of Emerging Workflows
Future research should include analysis of the nature of PHIMS related work from
multiple perspectives including those of consumers, patients, nurses and other care
providers. Workflows designed to support use of PHIMS in the context of
multidimensional organizational characteristics can bring value to consumers, patients,
nurses, providers and organizations. However, integrating PHIMS into clinical practice
will require workflow changes. Iterative design of workflows that support the
generation and use of personal health information in practice will drive adoption and
use of these systems as the benefits accrue. In this regard, research is needed to clarify
the change over time in the elements of PHIMS related work (job elements) and their
features, as well as the relationship between PHIMS elements and the type of user, user
class, and the role of the organization or site where PHIMS are used (e.g. hospital,
home, senior center) (Numasaki et al., 2008).
Time-motion studies are needed to analyze the use of PHIMS by user type, and
organization or site where PHIMS is used. This process will support workflow redesign
using component based architecture and ensure that emerging workflows are developed
and tested using an iterative process. Iteration in workflow redesign allows for
swapping out or exchanging workflow components associated with inefficient or
ineffective processes and developing and testing more effective processes with minimal
disruption to users and surrounding systems.
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Conclusion
This chapter explores emerging issues related to integrating PHIMS into clinical
practice. Recommendations are made for addressing and overcoming challenges to
technology access and adoption in ways that preserves the unique function of basic
nursing care while working with consumers, patients and other providers to build more
sustainable models of care delivery. In their role as patient advocate, nurses are in a key
position to assure that PHIMS applications and tools are available and used across
settings. A commitment to knowing the patient and keeping consumers and patients at
the center will ensure that PHIMS applications and tools support informed decisionmaking and are mutually acceptable to consumers, patients and other providers. Using
a systematic, patient/consumer-centric approach, PHIMS will be integrated into
practice in ways that preserve the essence of nursing in a technological age.
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Confidentiality and Safety: the Personal Perspective
Peter J. MURRAYa, Robyn CARRb, Elvio JESUSc,
Pirkko KOURId and Polun CHANGe
a
Centre for Health Informatics Research and Development (CHIRAD), Nocton, UK
b
IPC and Associates, Cambridge, New Zealand
c
Nursing Research Group of Madeira, Servico Regional de Saude, Portugal
d
Unit of Health Care, Savonia University of Applied Sciences, Kuopio, Finland
e
National Yang-Ming University, Taipei, Taiwan/ROC
Introduction
This chapter addresses the interrelated issues of confidentiality, privacy, safety and
security in the use of Personal Health Information Management Systems (PHIMS). In
particular, we consider emerging forms of electronic, often Internet-based or Internetaccessible personal health records (PHRs). The perspectives of the end-user or 'owner'
of the PHIMS or PHRs, i.e. the individual person or citizen, and those of the health
professional are addressed. These two perspectives are linked in many ways, not least
because most health professionals expect PHIMS or PHRs to interact in various ways
with other forms of healthcare provider-based electronic records. In addition, the
provision of health care or health maintenance and promotion around the world
requires that the individual interacts with a variety of healthcare providers.
The recommendations at the end of the chapter address both health professional and
individual end-user perspectives. The chapter tries to take an international perspective,
while recognising that much of the current drive for the development of PHRs , and the
majority of the current literature, derives from the USA. However, differing legislative
frameworks in different countries, and the increasing need to consider the effects of
mobile citizens and distributed computing, mean that challenging international sociotechnical perspectives will arise.
There are no definitive answers provided here to any of the issues raised, but rather an
exploration of a number of questions that will need to be addressed by all stakeholders,
i.e. by individual citizens, health professionals, informal family carers, and providers of
PHIMS and PHRs.
The concluding recommendations are framed mainly around the need for educational
and other actions to address these questions, in particular the development of guidelines
for best practice in the areas of confidentiality, privacy, safety and security by all
stakeholders involved in the use of PHIMS. Definitions and descriptions of PHRs and
the four main themes introduce the chapter. The need for confidentiality, privacy,
safety and security is taken as a 'given' in all forms of health records, including PHRs
and in PHIMS.
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What is open to discussion are the implications for these four interrelated issues in a
world where:
records will be increasingly held and accessed electronically
the locus of control on making decisions on access to and use of the records is,
in many countries, shifting away from the health professional and towards the
empowered individual citizen or person, and
different people or groups may have differing views on the relative
importance they attach to the issues of confidentiality, privacy, safety and
security.
We make the assumption that, to the greatest extent possible, there is a wish to foster
equity of access to and use of PHIMS and PHRs by any individual person in any
society or situation, and using any health care system, anywhere in the world. Such
equity of access may be limited by many factors, not least the various forms of the
digital divide, or restrictions on access and use through any one of the many forms of
disadvantage that may be present.
Exploring definitions
EHR, EMR, PHIMS and PHR
The descriptions of PHIMS and PHRs used here are congruent with those used
elsewhere within this text, although we recognise that these concepts are still evolving.
PHIMS are described as “a suite of tools and sources of data that support health for
individuals” and PHRs as “an electronic, universally available, lifelong resource of
health information maintained and owned by an individual”. It is important to note that
there are differences between the electronic health record or electronic medical record
(EHR or EMR) and the PHR. Although the legal situation varies between countries, the
EHR and EMR are either viewed as being owned by the healthcare provider, with
information entered into the record(s) by a range of health professionals or as being
jointly owned between provider and the individual. Distinctions are made in some
countries between ownership of the record itself and of the information held within the
record.
The emerging models of the PHR increasingly view them as owned, or controlled, by
the individual person: the record may stay with them, and so be available wherever
they are. Online PHRs are seen as offering portability, interoperability and security;
they are close to the top of the healthcare technology agendas in many countries. They
are viewed by many as helping to meet the expressed aims of many governments aims
of personalising care, and of increasing the participation or people and patients in the
ways in which decisions about their care are made (OpenClinical, 2007). The
Connecting for Health Markle Foundation (2003) report on PHRs has influenced
discussion of models of PHRs, describing them as “an Internet-based set of tools that
allows people to access and coordinate their lifelong health information and make
appropriate parts of it available to those who need it.”
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This view challenges the traditional model of provider-held and professional-controlled
health records. It requires a shift in thinking by health professionals and healthcare
providers about the locus of control on access, definitions of confidentiality, privacy,
and other issues. he Healthcare Information Management and Systems Society
(HIMSS) described the electronic Personal Health Record (ePHR) as being “owned,
managed, and shared by the individual or his or her legal proxy(s)” and stated that it
“must be secure to protect the privacy and confidentiality of the health information it
contains” (HIMSS, 2007).
The dominant model that is emerging in many countries is that the individual person is
the primary user and controller of the PHIMS/PHR. He or she may allow access to all
or part of the records to a legitimate stakeholder, for example, a nurse, doctor, family
member, employer, insurance company. This shift in the locus of control, along with
the the need for new forms of “anytime, anywhere” access to the systems, have
implications for the features of, and approaches to confidentiality, privacy, security and
safety.
Confidentiality, privacy, safety, security
Harman (2002) acknowledges that confidentiality, privacy and security are often used
interchangeably, but that there are important distinctions; privacy relates to a person's
right to be free from intrusion into or observation of their private affairs, and to
maintain control over personal information. Confidentiality is seen as relating to
responsibilities for limiting disclosure of information shared in confidence, and to it
being disclosed only with the consent of the individual. Security relates to access
control and protection of information, through physical and/or electronic protection of
the availability and integrity of information, and of resources used to store, process and
communicate information. Safety is generally viewed as relative freedom from danger,
risk, or threat of harm, injury, or loss to personnel and/or property, whether caused
deliberately or by accident.
Confidentiality, privacy, safety and security related to paper records have been well
addressed in the literature, and in legislation in many countries. As we move into a
future where health data and information will be held, managed and accessed
electronically, there is discussion about whether current approaches to managing these
issues still apply, or whether they need to adapt to changing expectations and practices.
Healthcare has been described as lagging behind other sectors (in particular the aviation
and financial sectors) in its adoption of computing and of information and
communications technologies. Other sectors have already addressed the implications of
the changing use of technology for issues such as confidentiality and privacy of data
(e.g. banking and financial data), individuals' attitudes, and safe and secure electronic
storage, transmission and use of data. There may be lessons from these other sectors
that can be adopted or adapted by health care sector.
The commercial bank model for health records, and in particular PHRs, is seen by
several authors, who see it as having advantages, and practical examples of the model
are being explored (Dimick, 2009). The concept of a "health information bank" was
suggested in the late 1990s by Bill Dodd, a Scottish GP, as a model wherein
86
information would be shared through a variety of 'transactions' based on the person's or
patient's explicit consent (Dodd, 1997). The "bank" would store extracts or summaries
of health records, with the individual granting access to other on the basis of
professional need; it would also serve as the summary lifetime health record (as per
many PHR models today), which would contain links to locations holding more
detailed information about care episodes (Dodd, 1997; Protti, undated). Gold and Ball
(2007) and Ball, Costin and Lehmann (2008) also discuss the possibility of emulating
the commercial banking model for collection and storage of health information in
'health record banks', with data collected from a variety of sources, and models for data
sharing.
Confidentiality, in relation to any health-related information about an individual, is
generally viewed as legally and ethically required principles and practices that compel
professionals to not disclose information without legal authority and the consent of the
involved parties. It is the right of an individual to have personal, identifiable health
information kept private. In England, the National Health Service's (NHS)
Confidentiality Code of Practice (Department of Health, undated), describes a “duty of
confidence” for all NHS staff “when one person discloses information to another (e.g.
patient to clinician) in circumstances where it is reasonable to expect that the
information will be held in confidence”. It further notes that this duty of confidence is a
legal obligation, a requirement established within professional codes of conduct, and
must be included within NHS employment contracts as a specific requirement linked to
disciplinary procedures. Similar regulations and sanctions apply in other countries.
Amatayakul (2002) notes that confidentiality is implicit in the sharing of information,
stating that when information is shared with someone else in confidence, then a
condition is established that is termed 'confidentiality'. Security in this context relates
to the measures to ensure that this confidential information can only be accessed by
those to whom the individual has granted permission. Similarly, the American Health
Information Management Association (AHIMA, 2007; 2008) believes that
confidentiality, privacy, and security are “essential components of a viable health
record”, and that they are necessary to support both trust and the reliable exchange of
health information between individuals and their healthcare providers. They recognise
that there are “no infallible means to ensure absolute respect and protection for the
confidentiality and integrity of a patient’s personal health information”, and propose
that trust can only be maintained by the use of laws and regulations to mandate
adherence to standards, and through the prosecution of those who breach the trust.
AHIMA's (2007) recommendations for achieving confidentiality, privacy, and security
of health information are predicated on the need for:
all health information, wherever it may be gathered or stored, to be collected
and used legitimately
uniform standards to be applied to protect individuals from harm as a result of
intentional misuse
the development and application of high standards and uniform practices that
respect the rights of the individual and the public and that apply in whichever
medium the health information is gathered, stored, or used, and
the rights of individuals to access their health information in any setting.
87
They also support the need for individuals to understand their privacy right and
options, and to have the right to appropriately challenge the accuracy of any
information held.
Privacy is an issue that is often treated in combination with confidentiality. For
example, the UK's Human Rights Act 1998 discusses the “duty to protect the privacy of
individuals and preserve the confidentiality of their health records” (Department of
Health, undated). In the context of this discussion, information or data privacy refers to
the relationship between collection and dissemination of data, the technology used, the
public expectation of privacy, and the legal and political issues surrounding them.
Privacy concerns are related to personally identifiable information that is collected and
stored, increasingly in digital form, and the improper disclosure of or access to the
information.
Security of electronic PHRs/PHIMS terms can be maximised by using suitably secure,
encrypted online communications and interactions. In the past, this has meant
encrypted websites are viewed as having good security, while e-mail and SMS are not
secure unless using encrypted systems. Of equal importance in the security equation is
preventing the wrong people from accessing records, ensuring that the right people can
access health information and records (Patientsknowbest wiki, 2008).
The health and medical literature, as well as the popular media and opinion polls, show
that in many countries, the public, patients and health professionals are skeptical about
the privacy, security, and safety of health information systems, and this has been
suggested as one major reason why adoption has been slower than the related literature
and polls on perceived benefits would suggest should be the case (Connecting for
Health, Markle Foundation, 2008a; Terry & Francis, 2007). In practical terms, there
has to be a balance between confidentiality and security on the one hand, and
convenience and cost. A totally safe, secure and confidential system for using and
accessing PHIMS/PHRs would be one that, in practical terms, no-one else would be
able to access. In the context of multidisciplinary health maintenance or healthcare, this
would be impractical. Individuals increasingly access their PHRs via the Internet, using
state-of-the-art security and privacy controls, at any time and from any location.
The need for robust security will have to be balanced with the need for PHIMS/PHRs
to be easily accessible; perfect security is incompatible with perfect utility. For
security, systems will be needed to authenticate users. Such systems may include
technology such as smart cards, hardware tokens or independent agencies that provide
digital signatures or certificates to confirm the identity of PHR users. To maintain
privacy, people need mechanisms that will allow them to specify what parts of their
PHIMS/PHR will be shared with specific providers and institutions (Connecting for
Health, Markle Foundation, 2003).
Attributes of Personal Health Records
Consideration of some of the distinct attributes in the Connecting for Health, Markle
Foundation (2003) description of PHRs, identifies some of the issues that arise:
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Each person controls his or her own PHR, deciding which parts of their PHR
can be accessed, by whom, and for how long. This means that systems have to
be developed to support such individual control, including for how long
permissions for access may last (eg on an episodic basis, or for a longer period
of care). Access control to the PHIMS/PHRs needs to be sufficiently secure to
met both the requirements of the individual and the practicalities of providing
support or care.
PHRs contain information from one’s entire lifetime. If a PHIMS/PHR is to be
truly a lifelong record, the system design and technical standard must support
current information exchange and portability (Tang & Lansky, 2005), as well
as being interoperable with other systems, and being future-proof, which
probably means the use of open as opposed to proprietary standards to avoid
vendor-specific problems of future use and data migration.
PHRs are “transparent”; PHRs permit easy exchange of information. If
individuals are to exercise full control over their records and information, they
need to be able to see who entered each piece of data, where, when and how it
was transferred to and from if shared with other records or people, and who
has viewed it. Confidential systems need to support legitimate use and
sharing, but security controls need to not only track usage, but deter
unauthorised use, and be such that the individual is comfortable with the
degrees of security.
Practical challenges
This exploration of some aspects of the issues raised above is framed around a series of
higher level questions and issues, and for each one, some of the emerging practice is
introduced, and a number of other questions generated. The section begins by exploring
issues around the ownership of the data, information and records, from which arise
issues of who controls access and how it is controlled.
The section concludes with exploring whether the issues for electronic systems and
records are the same as, or different from those of traditional paper records, and how
attitudes to the issues might be changing, and so might impact the future development
of systems and of education and awareness raising of all stakeholders in using
emerging forms of PHIMS/PHRs. As indicated earlier, questions are raised within the
discussion that still await answers; it may be some years before consensus is reached
on solutions.
Ownership of the information and the record
One of the fundamental issues underpinning all discussions in the areas of
confidentiality, privacy, security and safety for PHIMS/PHRs is that of ownership of
the data that are put into, and stored, manipulated, or accessed. The basic questions are:
whose data is it? who owns the data? Are the data owned by the individual generating
the data, i.e. the person whose blood pressure or blood sugar, or weight is measured,
and then somehow stored?
89
Are there circumstances in which they might not own the data? If the data are stored in
a PHIMS or PHR, are the data then owned by a third party, such as the system/record
provider, by the hospital or health professional to whom the data are given or with
whom they are shared? We can ask the questions in a number of different forms, such
as whose health record is it? who determines what can be in it? who determines what
can be done with the data or the record?
As health information becomes increasingly networked and technology permits health
information to be transferred more easily, the lines demarcating ownership of health
information become further blurred (Coffield, 2009). Whatever answer is reached on
the issues of ownership, much health data is stored because someone thinks that it will
be useful to share it with other people or organisations in certain contexts, often in
healthcare encounters. There are, therefore, a number of legitimate users and
stakeholders, as summarised in Table 1 (over). Users are those people or organisations
that have authority to use an application, equipment, process, or system, or who
consume or employ a good or service to obtain a benefit or to solve a problem, and
who may or may not be the actual purchaser of the item. In the context of
PHIMS/PHRs, they include nurses, GPs, allied health professionals, and family
members. Stakeholders are people or organisations with a direct interest, involvement,
or investment in something; in this context, they will include governments, Ministries
of Health and/or Social Welfare, WHO, and other organisations.
Controlling access or sharing of the data and record
Under traditional models of health records, usually paper-based, healthcare providers
are viewed as 'owning' the health/medical records they maintain, with individuals (in
this context, usually patients), having rights of access to the information in the record.
In many countries, individuals have always had, but perhaps not understood or realised,
or have gained, rights to request corrections to their medical information and the
assurance that such records are maintained confidentially.
In emerging PHR models, which are underpinned by the rhetoric, if not necessarily the
practice, of 'person/patient-centric records', this provider-based ownership model
information is changed. Instead of provider-based control, where the healthcare
institution or professional provides access to and/or copies of the record, the PHR
model puts the individual person, or patient, in control of his or her medical and health
information (Coffield, 2009). In a US survey, more than 90 percent of people said their
express agreement should be required for each use of their online health information
(Connecting for Health, Markle Foundation, 2008a).
Related to the ownership of any health-related data are issues of who has access to the
data, and who is able to determine or delegate whether others access. In patient-centric
PHR models, or PHIMS where the individual is at the centre of the model, there is an
assumption or implication that the person themselves decides who they will allow to
access, or share the data/information. In most encounters with other health
professionals, whereby a multi-professional or multi-agency team of people is involved
in healthcare, health promotion or health maintenance, there will be a need for some
sharing of information. In considering who determines access, there are the related
issues of who is responsible for ensuring confidentiality and safety around such access?
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Table 1 - Defining users and stakeholders
Users
Stakeholders
Individual
Individual
Family members
Family members
Nurse
Nurse
GP
GP
Specialist
Specialist
Allied Health Professional
Allied Health Professional
Comments
Owner
Informatician
Government
Funders / Policy makers
Ministry of Health
User of Statistics etc
Social Services
Sharing & Ethics
System Developer
Vendors
IT specialist
IT support
Educator, Manager
Halamka, Mandl and Tang (2008) are among many who have recently explored the
implications of patient-centred PHIMS/PHRs, and the issues arising. They note that
there will be many new policy and technical challenges for healthcare institutions, but
that this may also provide opportunities. Through placing the person or patient at the
centre of healthcare data exchange, and empowering them to become the steward of
their own data, the responsibility for protecting confidentiality is also shifted and
becomes the personal responsibility of every participating individual or patient. This is
seen as a way of 'solving' many of the privacy and consent issues faced by
organizations desiring to exchange data today by simplifying consent models among
producers and consumers of healthcare data.
The issue also arises of whether there might be circumstances when, in the interests of
the larger public good, the wishes of the individual will need to be over-ruled. If an
individual has, for example, a communicable disease, and is behaving in what society
would deem an irresponsible manner in relation to putting others at risk of contracting
the disease, does society have rights to access the person's information, even if they
have to over-rule the person's wishes to obtain it? How do we accommodate balance
between privacy needs/desires of individuals and the need to access/share information
so as to provide healthcare? when does the public good prevail? Other issues also arise
in relation to control of access toPHIMS/PHRs. Bourgeois, Taylor, Emans, Nigrin, and
Mandl (2008) note that access control policies need to take account of developmental
and age-defined rights of users to preserve privacy, confidentiality, and best interests.
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They suggest the development of access and security policies, tailored such that the
PHR is not only under patient control, but one that may also be accessed by parents,
guardians, and third parties. For increasing mobile populations, there is a need to take
account of differing national and regional legislations relating to confidentiality and
safety of PHIMS/PHRs, and to data that may be stored in different jurisdictions from
that where it is generated and/or used, and that is accessed from multiple locations by
individuals and health professionals.
Pagliari, Detmer and Singleton (2007) suggest that a 'one size fits all' model for
different types of ePHRs would be inappropriate, and that different models confer
different rights for access, privacy and control, with the resultant need for appropriate
standards to ensure transparency of contributorship and access, as well as
interoperability and valid data integration. The Connecting for Health, Markle
Foundation (2008a) report found that around 90 percent of people surveyed identified
one or several privacy practices as factors that would affect their use of an online PHR,
including an individual being able to review who has had access to their personal
health information, there being clear processes to request corrections or dispute the way
their information is handled, and individuals having control over what information
from their records was made available to others (eg, decide not to include information
about treatment for a sensitive medical condition).
A UK study of patients' views on the information held in their paper GP records that
could be included in a national EHR system illustrates some of the practical issues that
might also arise within PHR systems (Powell, Fitton and Fitton, 2006). Concerns were
raised about issues of data accuracy, security and confidentiality.
Study participants were asked to highlight information which they would not want to
be shared on the national electronic database of records, and information which they
considered to be incorrect. While less than one in six patients identified information
that they would not want to be shared, relating almost entirely to sexual health and
mental health, one in three identified incorrect information in their records. The
findings in relation to data sharing fit with the commonly held assumption that matters
related to sensitive or embarrassing issues, which may affect how the patient will be
treated by other individuals or institutions, are most likely to be censored by patients.
Are the issues related to PHIMS the same as in manual/paper systems?
As PHIMS and PHRs increasingly imply electronic storage of health information, all
stakeholders need to consider whether the approaches, attitudes, laws and regulations
and sanctions against misuses that have applied, or evolved, over many years to paperheld records can still apply to electronic records.
If the answer is 'no', even 'not necessarily', then consideration needs to be given as to
what new approaches are needed, and to what effects the use of current and future
technologies might have. Among the questions to be considered are:
do issues of confidentiality and safety apply the same across all of these types
of storage and use?
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do they vary depending on the nature of the technology etc?
are there some common issues and some variable ones?
are existing legislations, approaches and attitudes adequate?
The predominant model for the PHR is a repository of all clinically relevant health
information kept securely and viewed privately by patients and their health care
providers. While this type of record does seem to have beneficial effects for the patientphysician relationship, the complexity and novelty of these data coupled with the lack
of research in this area means the utility of personal health information for the primary
stakeholders - the patients - is not well documented or understood. Kaelber, Jha,
Johnston, Middleton and Bates (2008) found that, although there are potential
technological privacy and security advantages for PHRs, the general public appears
more concerned about these issues for electronic records then for paper-based records.
Important issues that will need to be addressed in terms of both technological and
social solutions, as well as education and awareness raising, emerge where many
organisations and individuals may be sharing the data within the PHIMS/PHR. People
may wish to share their PHIMS/PHR information with others not involved in
healthcare (and in some countries the distinction between health care and social care or
social welfare is becoming increasingly blurred). Practical issues of people being able
to remember passwords may diminish use, while easy or shared passwords and security
controls increase the likelihood of security breaches.
Who uses PHIMS/PHR? - are attitudes changing?
The Connecting for Health, Markle Foundation (2008a) survey of American adults
found that, while almost half of those surveyed would be interested in an online PHR,
and 80 percent believed that they would be beneficial in managing their health and
healthcare, over 55 percent of those who were not interested cited concerns of privacy
and security as part of their reluctance. In addition, despite the anecdotal evidence cited
by may proponents of PHRs that they would be a natural progression of the personal
and family records that many people purportedly maintain, the study found that 60
percent did not keep any form of health personal health records, and less than three
percent had an electronic PHR. Despite this, Schorsch (2008), commenting on the
launch of Google Health and Microsoft Healthvault, suggests that "PHRs and
electronic medical records remain an industry-driven vision, not a consumer-driven one
- focused on efficiency and reducing costs. ... we’ve lost sight of whether the consumer
really desires and is willing to participate in these services.”
A more recent (2009) survey (Deloitte Center for Health Solutions, 2009; McCabe,
2009) found that among the US population, only nine percent report having an
electronic PHR, although over 40 percent said they would want one; this is higher than
the two percent of hospitals that have 'comprehensive' EHRs. On specific issues of
privacy and security of personal health information, 38 percent were "very concerned",
while 24 percent "had no reservations about it". Interestingly, and perhaps in part
contrary to the conventional wisdom, women over 65 years of age and men aged 18-24
were least risk averse to sharing personal health information online.
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Are views of confidentiality changing (especially among the younger generation)? Are
people's views changing on what they share (and so on confidentiality and privacy)? A
study by the Robert Wood Johnson Foundation (Robert Wood Johnson Foundation,
2009) explored African Americans' and Latinos' attitudes towards confidentiality of
personal health records, wherein the individual's health information is controlled by the
individual, rather than by any segment of the health care system. Using focus groups,
whose members were generally unfamiliar with the concept of the PHR, but who
recognized its potential for improving health care, the study found that most
participants distrusted the security of electronic records systems and preferred a record
kept on a portable "smart card." Participants wanted control over who has access to
their personal information, and what information they could see. Most existing personal
health records lack many of the features, such as smart cards, that would appeal to the
populations represented in the focus groups.
In many surveys (for example, California Healthcare Foundation, 2005; Ball, Smith
and Bakalar, 2007), concerns are expressed about the privacy of personal health
information held in various forms of health record, and in particular about the
confidentiality of the information, and their ability to control access, such that other
people who they might not wish are not able to access that information (often
employers or insurers).
Privacy and confidentiality concerns will affect consumers’ choice of media for a PHR,
although there may be variations between sectors of populations with different
expectations or experiences of a range of technologies; younger people might prefer to
keep their PHR online, while others might be concerned about identity theft or hacking
and will carry their data on a universal serial bus (USB) key in their pocket (Ball,
Smith and Bakalar, 2007).
While there is a growth in health care providers (e.g. hospitals) and third parties (e.g.
Google) providing forms of PHR, there is also the emergence of online communities of
people and patients, either with health and disease issues, or wishing to maintain and
promote healthy living, who are using new Web 2.0 technologies to share information
among themselves. Questions are emerging as to the nature of these types of PHIMS,
which may have no involvement of, or interaction with, health care professionals or
healthcare providers. This indicates the emergence of new attitudes to the maintenance
and sharing of information online with other people. One study (Pratt, Unruh, Civan
and Skeels, 2006), of breast cancer patients, found that they expressed a need for
additional information management, and to share aspects of their personal (as well as
health) information with other people. They routinely made trade-offs between the
efficacy of immediate communication about private health information in a public
setting and their desire to maintain their personal privacy.
There is some evidence that attitudes to privacy and confidentiality may be changing.
We therefore have to consider whose definition of confidentiality will be applied in
relation to any health data. Will it be the definition of the hospital record provider, for
example, who may take a narrower, more traditional view of the issues? Or will it be
the definition, for example, of the teenager who is happy to share all of his or her
personal information on their Facebook profile, or via other social networking media,
with their friends, and who may be much more open about sharing information – or
94
who may be insufficiently aware of the implications of that sharing. It will be important
to consider such changing attitudes in the future, and for health professionals, including
nurses, to work with individuals, groups and communities, to address new 'cultures' and
forms of interaction and of searching for, evaluating and sharing health information.
Research into these areas, and education to address the issues will be important areas to
address.
Few studies examine the use of personal health information by patients themselves. A
study of PatientsLikeMe (Frost, Massagli, 2008), an online community built to support
information exchange between patients with tools to help patients understand and share
information about their condition and reference personal health information within
patient-to-patient dialogues, found new attitudes emerging. Data on their current
treatments, symptoms, and outcomes are displayed graphically within personal health
profiles and are reflected in composite community-level symptom and treatment
reports. Users review and discuss these data with a variety of commenting and
questioning behaviours by patient members.
Members referenced data to locate others with particular experiences to answer specific
health-related questions, to proffer personally acquired disease-management knowledge
to those most likely to benefit from it, and to foster and solidify relationships based on
shared concerns. This project suggests how patients who choose to explicitly share
health data within a community may benefit from the process, helping them engage in
dialogues that may inform disease self-management. Future designs will need to
address each individual's health information as clear as possible, automate matching of
people with similar conditions and using similar treatments, and integrate data into
online platforms for health conversations.
Patientsknowbest (2008) also propose the development of an 'openness philosophy', as
opposed to the common 'privacy policy'. They describe the approach as counterintuitive, but believe it may help to address many of the issues raised over privacy as a
result of person-centred PHRs/PHIMS. The philosophy is based in the view of sharing
healthcare experiences and outcomes being a good thing for people to do. They propose
that when people share data, and collaborate on a global scale, new treatments and
changes in healthcare and healthcare systems may become possible. They also suggest
that opening up access to people's healthcare information, as opposed to the current
systems wherein most healthcare data is inaccessible due to privacy regulations or
proprietary systems and approaches, patients are not always able to get the information
they need to make treatment decisions, and research is additionally slowed. In a manner
akin to the Web 2.0 concept of the 'wisdom of the crowd', they suggest that if the data
belongs to the person or patient, to share with other patients, caregivers, physicians,
researchers, pharmaceutical and medical device companies, then through sharing and
adding to collective knowledge, everyone's health will benefit.
Promoting equity, avoiding digital divides
It has been suggested that, while paper records have many drawbacks in terms of
access and sharing, they have benefits in that anyone can use them, while electronic,
online and networked PHIMS/PHRs potentially risk creating, or encouraging, digital
divides. There are many complex issues involved in promoting equity and it is not
95
possible to explore them in detail here. However, these issues need to be considered in
the development of PHIMS/PHRs as do the education and awareness raising that is
required among individuals, patients, and health professionals and healthcare providers.
Among the sectors of the population who might be disadvantaged are the elderly,
disabled, dependent people, technology non-users, migrants and the homeless.
Challenges in promoting equity and avoiding digital divides include:
ensuring that the individual has access to personal health information when
needed
addressing the current lack of technical standards for interoperability
exploring the provision of PHIMS/PHR services through a wide range of
personal, portable devices, and access through public service kiosks, or similar
for those unable to access or use other methods
promoting health literacy
ensuring that access is not restricted through language issues.
Examples of tools and approaches
Several organisations have sought to provide education or have developed frameworks
aimed at individuals and/or health professionals, to foster 'best practice' in the issues
explored. The examples provided below are not an exhaustive list but they illustrate the
kinds of approaches that have been or are being tried, many of which have common
features, and that might provide guidance in the development of international or
regional guidelines on the ways in which people interact with PHIMS/PHR.
Canada – Ombudsman Manitoba, Privacy Compliance Tool The purpose of the
checklist in this tool is to provide a diagnostic process for privacy compliance that
covers the basic requirements of sound information privacy practices. It is designed to
assist organizations evaluate the privacy compliance of a program, a specific initiative,
a policy or an information system. (Ombudsman Manitoba, 2003).
Finland - Finnish Patient Safety Strategy, 2009–2013 “Promoting Patient Safety
Together” was published by the Ministry of Social Affairs and Health in January 2009.
(http://www.stm.fi/c/document_library/get_file?folderId=39503&name=DLFE7801.pdf). Its vision is that, by the year 2013, patient safety will be embedded all
structures and methods of operation to ensure that care and treatment are effective and
safe. It includes addressing data management and issues related to data/knowledge
transfer. By addressing a combination of culture, management, legislation, and
personal responsibility the Ministry seeks to engage patients and individuals through
education, systematic promotion of safe practices, and safety. These are also being
embedded in health research and teaching.
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USA - AHIMA The American Health Information Management Association (AHIMA)
has developed a website aimed a range of types of individual (including patients,
parents, family caregivers, and those seeking to maintain health) with a section titled
“Your Privacy Rights” that provides basic, simple information on privacy issues, and
on the question of 'who owns your health information'. This resource can be accessed at
http://www.myphr.com/index.php/privacy_and_phrs/your_privacy_rights/
England - NHS Care Record Guarantee The NHS Care Record Guarantee is a
document explaining to patients how their records will be keep secure and confidential
under the new her systems being developed. It covers systems of access control to the
records, for example through smartcards used by NHS staff, with additional passwordcontrolled security, which aim to ensure that health professionals are only be able to
access the information they need for the patient's care and treatment, based on the
professional's job role. Audit trails that log every time someone accesses a record are
kept, providing additional security to ensure confidentiality of the records.
http://www.nigb.nhs.uk/guarantee/crs_guarantee.pdf
USA - Medicare PHR Choice A website that provides information on a range of types
of PHR, a comparison chart, and information on security and privacy policies for this
organisation. http://www.medicare.gov/PHR/PHRChoice.asp
USA - Markle Foundation, Common Framework for Networked Personal Health
Information Policy Brief A document that provides summaries of a number of issues to
be addressed as PHRs are developed, or other networked PHIMS.
http://connectingforhealth.org/resources/CCPolicyBrief.pdf
The above examples are primarily approaches developed by healthcare providers.
Others have proposed alternative approaches, such as the development of a “CyberPatient's Bill of Rights” (Abril & Cava, 2008) that outlines the rights and
responsibilities of patients (and by extension people who might wish to use
PHIMS/PHRs to maintain or promote healthy living) in the areas of confidentiality,
privacy, etc. The document begins from the premise that we should “Start with what is
right rather than what is acceptable”, and seeks to “systematically anticipate, address,
and organize a set of norms and rules for the online health networking environment.”
The proposed “Bill of Rights and Responsibilities” is based on principles that include
educating and engaging people through developing trust in the systems, technologies,
and in the communities of people and stakeholders they might interact with, and fosters
a duty to respect for other users. Among the articles of the Bill are that the 'cyberpatient' has rights, including:
1.
Right to an Effective Architecture of Privacy – this is based on the providers of
PHIMS/PHR systems ensuring that they make use of the latest technological
advances and resources to protect information from being used or accessed
inappropriately, so as to protect the integrity, security, and confidentiality a
person's health information.
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2.
Right to Informed Consent - the right of the person to know, or be educated,
before disclosing personal information online, how the provider will safeguard
any information the person provides and/or shares. This means that they must
have understandable information about the technological system and its
capabilities, privacy policies, and who has access to any records, postings, or
other online activities.
3.
Right to Control Disclosure of Information – if the premise underlying many
PHRs/PHIMS is that they are truly person-centric, individuals are in the best
position to decide what information to disclose and to whom. Users must,
therefore, have the right to control their information, and the ability to grant or
deny access to their information on a context-by-context basis. This includes
allowing them to set the specific levels of confidentiality expected of each
piece of information they add to the PHIMS/PHR.
4.
Right to Accessibility and Portability - the person has the right to access, alter,
and delete any information pertaining to them, and to easily transfer their
profiles, information or records to other online health record systems (Abril &
Cava, 2008)
With rights also come responsibilities or duties, and the Bill proposes that the
individual be charged with responsibilities over their online privacy as follows,
including:
1.
2.
3.
Duty to Understand – a duty to ensure that they understand the nature of the
online environment they are using, and adjust expectations of privacy
accordingly
Duty to Maintain the Confidentiality of Fellow Users' Information
Duty to Refrain from Using Network for Commercial or Other Illicit Purposes
(Abril & Cava, 2008).
To some, especially to some health professionals, the proposals in such a Bill of Rights
may seem to tip the balance too far away from the traditional model of sharing and
control over records, but it is a logical extension of the move to true person-centred
records.
Looking to the future
While many people may struggle with the challenges of PHIMS and PHRs, it is
important to consider that many of the solutions we adopt will need to be future-proof,
to take account of new and emerging technologies and new forms of health information
that the technologies will provide and support. Perhaps one of the most important of
these new areas is the vast amount of genetic information that will be available about
individuals, and that will become part of, or interact with, their health records.
McGuire et al (2008) acknowledge that, as we move towards more personalised health
care, which they also imply will be more effective, the amount of complex genetic and
genomic information contained within electronic health records will increase. In the
same way as AHIMA recommend for records, they see a need for appropriate
98
protection of this information, but also question whether genetic/genomic test
information should be treated differently from other health information for purposes of
data access and permissible use, and whether special protections should be created for
genetic/genomic information that is held in the EHR. We are seeing the emergence of
PHRs being provided not only by 'traditional' healthcare provider organisations, who
recognise the importance of emerging new models of care and relationships between
people and their care providers – and who, in countries where competition exists,
presumably wish to maintain their market share – but also by 'non-traditional' providers
of PHRs. The most well known examples of the latter are Google Health and Microsoft
Healthvault. A recent study of users' experiences (Peters, Niebling, Green, Slimmer &
Schumacher, 2009) found that participants preferred Google Health, mainly due to its
greater ease of use, although features such as security, privacy and trust did influence
participants' overall evaluations. It is critical to note that their major difficulties with
both applications - and their strongest criticisms - were related to the user experience.
As Perry (2009) notes, both companies have a lot to lose if their records are not secure.
If there is to be widespread adoption and acceptance of PHRs and PHIMS, there will
need to be further research into, and education and guidance on, a wide range of issues,
not least “clarification of boundaries and responsibility for ensuring accuracy and
integrity of health information across distributed data systems; and understanding
confidentiality and privacy risks” (Weitzman, Kaci & Mandl, 2009).
Recommendations
The recommendations arising out the preceding discussion of the issues aim to provide
direction in the areas of confidentiality and safety, and form the basis of an action plan,
including the development of resources aimed at individual people, health professionals
and care providers. We recommend that:
1.
2.
3.
4.
Education and awareness raising, for all concerned, is probably the best way
of fostering best practice in ensuring the confidentiality, safety and security of
people's health information in PHIMS. For heath professionals, this will
usually be supported by some kind of legal or professional sanctions to deal
with breaches of confidentiality, safety best practice, etc. The former will be
both country-specific and require international guidelines; the latter will most
likely be country-specific
Ihe Special Interest Group on Nursing Informatics of the International Medical
Informatics Association (IMIA-NI) should establish a Working Group on
Confidentiality and Security to further address the issues raised and develop
specific actions, working with the IMIA-NI Standards and Education working
groups.
An online resource (website, wiki, or similar) should be developed that brings
together a suite of tools and sources of data to support health through
confidentiality and safety (multi-lingual; multiple media).
Clarification of the ethical principles that are going to inform the PIHMS
(person autonomy, ownership information, professional secret, etc.) needs to
be undertaken and consensus gained about the concept “owner of information”
in order to know if there is any information belonging to the PHIMS that the
holder (the citizen) cannot access (or directly access).
99
5.
6.
7.
Nurses who are engaged in the care process of an individual, group or
community must have the legal and professional right to access to all the
information that belongs to the PHIMS, if the owner (citizen) give the
necessary permission;
There needs to deeper participation of nurses, and national and international
nursing organisations and other professional regulators in the debate with
statements positions prepared about the issues related to nursing practice,
ethics and deontological codes;
There needs to be harmonisation (worldwide or at least within the European
Union) of the legislation about nursing and the others health professionals’
and citizens’ rights to access to PHIMS information.
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Governance and Policies that Enable the Adoption and
Use of Personal Health Information Management Systems
Heather STRACHANa, Anneli ENSIOb , Ragnhild HELLESØc
,Joyce SENSMEIERd and Walter SERMEUSe,
a
eHealth Directorate, Scottish Government, Edinburgh, UK
b
University of Kuopio, Finland
c
Faculty of Medicine, Institute of Nursing & Health Sciences, Univ. of Oslo, Norway
d
Healthcare Information and Management Systems Society (HIMSS) Chicago, IL USA
e
Center for Health Services Research, Catholic University Leuven, Belgium.
Introduction
This chapter explores governance and policy issues that influence the uptake and use of
Personal Health Information Management Systems (PHIMS). The authors identified
six key areas for governance: health policy; finance and incentives; people
engagement; legalization; professional practice; and evaluation. These key areas are not
intended to be the complete list but were considered by the authors to be the most
significant areas for governance. A goal that would influence the adoption and use of
PHIMS is identified for each of the six areas, together with a rationale and key
stakeholders that we suggest influence each issue or upon whom the issue will
primarily impact. Further detail about the area is then provided; it should be noted that
the two chapters in this text related to professional practice and confidentiality and
security provide a further level of detail and understanding in those two key areas of
governance. Also explored here is the overarching influence of culture on governance
and policy. Finally, overall recommendations are made regarding governance issues
that are essential to the future design, development and implementation and use of
PHIMS.
Before proceeding to highlight the key governance issues it is necessary to define
PHIMS. The literature often references electronic personal health records and while
there is no universally agreed definition of the ePHR, it has been described as "an
electronic application through which individuals can access, manage and share their
health information….in a private, secure and confidential environment” (Pagliari et al,
2007b p330). Models of the ePHR vary in the extent to which the content and control
is with the patient or the healthcare provider, although there has been a gradual
convergence towards electronic health record systems that combine both patient and
provider contributed content (Gaunt 2009).
From examples of ePHRs in use, additional functionality means that they have the
potential to support the management of health as well as management of health
information. We provide a definition that is deliberately broad, in recognition that this
field of health informatics is still developing. For the purposes of this chapter, a
Personal Health Information Management System is defined as "a toolkit of
information and information communication technology resources that enables
personal health management."
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Functionality may include: supporting access to information: supporting access to
services; and providing alternative methods of communication with health
professionals, healthcare providers and sources of support. The main goal is not simply
improving access to information or services but also supporting empowerment,
engagement of people in their healthcare and shared decision making between the
professional and the person (Bradwell & Farook, 2009).
Access to information may include:
Information about illness, treatment or care plans for self management
Providers' clinical records e.g. medical history or results reporting
Personal health information e.g. personal preference.
Access to services may include:
Personal health organiser (e.g. appointments diary or contact lists)
Health promotion tools (e.g. health or lifestyle questionnaires)
Ordering drugs, supplies or equipment.
Communication mechanisms may include:
Appointment alerts from the healthcare provider (e.g. reminders, clinical
appointments)
Tools to capture symptom or health behaviour data to share with health
providers.
Seeking advice from a clinician (e.g. patient-nurse email)
Links to sources of support (e.g. virtual peer networks) (Pagliari et al, 2007a;
Guant 2009).
Governance may also mean different things to different people. The group therefore
defined governance as "the policies and processes that drive the use and benefits
realization of PHIMS”.
PHIMS and Organisational Culture
‘Culture’ is an umbrella word that encompasses a whole set of implicit, widely shared
beliefs, traditions, values and expectations that characterise a particular group of
people. Issues that may influence the adoption and use of PHIMS include the culture of
the country, the organisation, the profession and even the individual person. To an
organization, culture is what personality and character are to the individual. It identifies
the uniqueness of the organisation, its values and beliefs. Just like an individual's
values and beliefs influence behaviour, so, too, does an organisation's culture influence
the behaviour of its members (Leavitt & Baharami, 1988b).
The implementation of any information and communication technology (ICT) requires
change. Such change impacts people within the organisation, their roles and working
practice, communication flows, information and control. Leavitt and Baharami (1988a)
suggest that managing organisational change should start with the organisation's
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mission, philosophy and vision of what kind of an organisation to create, and that these
are reflected by the organisational culture. It is therefore useful to examine what sort of
culture would be required to influence adoption and use of PHIMS. This understanding
of culture could potentially be used to assess an organisation's readiness or extent of
change in culture required to adopt PHIMS.
Culture Dimensions
One of the landmark studies which attempted to establish the impact of culture
differences on governance was conducted by Geert Hofstede in the late 1960s
(Hofstede 1991). The original study was based on a survey involving 116,000 IBM
employees in 40 different countries, asking for their preferences in terms of
management style and work environment. Hofstede identified four “value” dimensions
on which countries differed: power distance; uncertainty avoidance;
individualism/collectivism; and masculinity/femininity. Later he added a fifth
dimension which he called long term orientation, based on differences in countries
(Asian, African countries) that were not involved in the original IBM study.
The conceptual framework that we developed to support this exploration of governance
issues, asserts that the achievement of the goals identified in each area of governance is
dependent on the level of balance for the relevant cultural dimensions at either the
country, organisation or individual level. It was assumed that emphasis towards one
side of a dimension means less emphasis of the other side. It is also assumed that for
each dimension, the culture can influence the choices being made. For example the
organisation may need to respond to different patient cultures and some patients may
not wish to use a PHIMS. If the culture of nursing is a person-centered model of care,
then the nurse needs to respect the person's choice. Assumptions made in relation to the
conceptual framework require validating. We have attempted to apply these concepts in
some of the governance areas that we identified and we offer you the opportunity to
validate them as well.
Power distance indicates the extent to which a society accepts the unequal distribution
of power in institutions and organisations. This may apply to the relationships between
the supervisor and the employees, but also to teachers and students, to health
professionals and patients. Hofstede (1988) argued that organisations in countries with
a high power distance would tend to have more levels of hierarchy (vertical
differentiation), a higher proportion of supervision, and a more centralised decisionmaking. Status and power would serve as motivators. Leaders would be seen as
authorities. Introducing PHIMS, which challenges the power balance between health
professionals and patients, will probably be easier in countries or organisations with a
smaller power distance. PHIMS puts the person more in control of his or her own
health (record) rather than it being controlled by the professional.
Uncertainty avoidance refers to a society’s discomfort with uncertainty, with most
preferring predictability and stability. In countries with a high uncertainty avoidance,
organisations would tend to have more formalisation by rules and procedures. There is
greater specialisation related to technical competence in defining jobs and functions.
The role of leadership would be one of planning, organising, coordinating, and
controlling. In relation to PHIMS, we expect that in these high uncertainty avoidance
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countries, roles such as case management and clinical pathways will be defined to plan
healthcare throughout the lifespan, from the cradle to the grave. In low uncertainty
avoidance countries, there will be more willingness to accept uncertainty involving
personal preferences, individual choice, and personal value. Emphasis would be placed
on informing people, on shared decision making and on taking the risk that people
might make the wrong decision from a professional perspective.
Individualism/collectivism reflects the extent to which people prefer to take care of
themselves and their immediate families, remaining emotionally independent from
groups and organisations. In countries with a high collectivist orientation, there would
be a preference for group as opposed to individual decision making. Consensus and
cooperation would be more highly valued than individual initiative and effort.
Motivation derives from a sense of belonging. In countries with a high individualist
orientation, emphasis is put on personal achievements and individual rights. Everyone
has a right to his own opinion and is expected to reflect those opinions. The concept of
PHIMS is clearly developed in an individual culture putting high emphasis on
“personal” health. In these countries, focus will be placed on access rights to the
person’s health record (who has access to what data). In a collective culture, more
emphasis might be placed on a “family” or “group” health record in which the health of
a family or a group is managed. More emphasis might be placed on public health
issues, discussing life style issues (eating, drinking, and health prevention) for the
group rather than individuals.
The masculinity/femininity dimension reveals the bias towards either “masculine”
values of assertiveness, competitiveness and materialism towards “feminine” values of
nurturing, and the quality of life and relationships. (It should be noted that the research
from which these concepts were developed was undertaken in the 1960's and cultural
shift in this area could mean the use of the terms masculine and feminine and their
associated values could be challenged today. However, we believe that the opposing
sides of the dimension are still useful). In countries ranked high on masculinity, the
management style is likely to be more concerned with task accomplishment than
nurturing social relationships. In more feminine cultures, the focus would be to
safeguard employee well-being, and concerns about social responsibility. In relation to
PHIMS this dimension is strongly related to what people value. In some cultures, the
length of life (quantity) is valued. It might be that PHIMS in these countries are
focused on life style (to prevent), medication (to cure), exercises and rehabilitation (to
recover). In countries with feminine characteristics, quality of life is more highly
valued. The focus will be more on living with disease, giving meaning to illness, how
illness and disease bring people together, the work-life balance, etc.
Long term orientation is the fifth of Hofstede’s dimensions and was added later to
distinguish the difference in thinking between the East and the West. It originated from
a Chinese value survey across 23 countries and was built on an understanding of the
influence of Confucius. An example is the meaning of “old age.” In the West it is
mainly seen as something to postpone as it is linked with disability and discomfort and
should begin as late as possible. In the East it is something to strive for as it is linked
with status and wisdom.
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Long-term-oriented countries put more value on learning, accountability, and selfdiscipline than on truth; short term orientation focuses on the values of freedom, rights,
and success. An example of the impact of this dimension on PHIMS is the role of
evidence-based healthcare that is highly valued in the Western world. Incorporating
information about the evidence of interventions would be highly valued in these
countries. In long term focused countries, evidence-based healthcare is less valued
(there can be many truths at the same time); greater value is given to relationships, selfdiscipline and long term health promotion.
Health Policy
The health policies of governments and healthcare delivery organisations will shape the
way healthcare is delivered. This will be directed by their vision for healthcare, based
on the country's and organisation's culture and is achieved through the adoption of
various strategies, policies and governance arrangements, supported by financial
incentives and monitored via standards and performance targets. To foster the adoption
and use of PHIMS, their introduction must be explicitly linked to these health policies.
Goal: PHIMS should facilitate the delivery of health policies that emphasise health
promotion, disease management and the quality of healthcare to support personcentered healthcare, improve people’s healthcare experience and health outcomes.
Rationale: The drivers for PHIMS should be to support the goals of the healthcare
delivery system and people’s health needs, rather than be driven by the opportunities
enabled by the technology itself.
Stakeholders: Patients, the public and their representatives; nurses and managers;
professional regulators and societies; healthcare provider and purchaser organizations;
academic organizations; voluntary agencies and charities; ICT industry; and
government.
It is recognised that ICT is likely to be both a driver for change as well as enable the
changes needed to address future challenges and improve healthcare services. While
key stakeholders including governments and organisations should consider how ICT
might assist in delivering better healthcare, the implementation should be driven by
healthcare needs and policies rather than the technology itself. This will support
funding decisions and business cases necessary for adoption and use. ICT that is
introduced as a business change rather than an ICT project is more likely to be adopted
by clinicians who will need to adopt new roles and working practices as a result of the
new technology such as PHIMS.
Currently, the health of populations is affected by a number of drivers, the main ones
being an increasing elderly population, an increase in chronic diseases, new disease
patterns caused by changing lifestyles, and health inequalities. Correlate this with
advances in technology itself and the opportunities this brings to improved access and
sharing of information, the ability to provide services in different ways, and the
resulting change in culture of information use means our future healthcare delivery
systems have the potential to look very different than the current state.
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Together with tension brought about by increasing demand for healthcare and
decreasing resources, in terms of both manpower and funding, brings further drivers for
change that are both challenges and opportunities. Most countries in the world are
facing these challenges and their responses are reflected in health policies which will
require changes to the structure and provision of healthcare service. These are likely to
focus in three areas:
1.
2.
3.
patient-centered healthcare - healthcare that is centered around the values,
preferences and expressed need of the patient rather than the need of service
providers
shift from a hospital care setting into primary and community care
increasing number of service providers - both public and private, including
partner agencies such as social care.
Increasingly, the response to these challenges also includes a policy for patients and
their caregivers to take more responsibility for their health management and be more
involved in self management of long term conditions (The Royal Society, 2006).
Patient-led healthcare is not a new concept; patients, often with the support of their
families, already manage much of their own care. When they do interact with health
professionals, many decisions ultimately remain with the person, as do the
consequences. Information can help people improve the control they have over their
health and lifestyle and is critical to how people provide their own care in the form of
self-management or in making decisions or choices about their care. However, simply
providing information is not enough.
People require health literacy, which means they need to possess a wide range of skills
and competencies to enable them to seek out, comprehend, evaluate and use health
information and concepts to make informed choices, reduce health risks and increase
the quality of life (Waterton, 2009). This will require people and health professionals to
develop different relationships and places an increased emphasis on the role of the
nurse as a knowledge worker (Institute of Medicine, 2004). PHIMS has the potential,
along with cultural changes, to support both patient-centered healthcare and nurses in
their knowledge-worker role.
A number of the cultural dimensions described above link to the health policy drivers
and may be useful to identify the balance required for the introduction of PHIMS.
Health improvement, for example, may be dependent on the dimension of
individualism / collectivism. PHIMS can support people with individual health screen
programmes but may be of less value in a public health approach to health promotion.
If health policies support this approach to health promotion, then PHIMS will be an
essential tool to deliver this policy.
It has been recognised that increasing standardisation of care through professional
guidelines can conflict with the exercise of choice at the stage of the patient
involvement process (UK Department of Health, 2004). The uncertainty avoidance
dimension can support disease management approaches such as case management (i.e.
delivering care according to pre defined care pathways) on the one end of the
dimension, but must be balanced against the need to incorporate individualised care,
taking into account personal preferences which are less controllable at the other end of
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the dimension. PHIMS have the potential to enable patients to record their personal
preferences and for health professionals to deliver personalised health messages to
support self-care.
The masculine/feminine values dimension may underpin patient-centered care policy.
The need to balance care that is organised for the efficiency or convenience of the
health professional and service providers may benefit high performance (masculine
values), but it needs to be balanced against the delivery of person-centered care which
recognises the relationship issues identified in the feminine values. It is not intended to
assume that high performance and person-centered care cannot co-exist but suggests
that a balance is required in this dimension.
Finance and Incentives
Goal: PHIMS support decisions that are affordable, implementable, usable and
acceptable to key stakeholders to ensure investment
Rationale: To enable governments and healthcare providers to fund PHIMS, and
encourage clinical staff and people to use PHIMS to improve healthcare processes and
health outcomes
Secondary Goals:
Fund essential infrastructure and standardisation that fosters adoption of
PHIMS.
Introduce financial and non-financial incentives that encourage delivery of
PHIMS by healthcare providers and use by people to improve health
outcomes.
Stakeholders: Patients, the public and their representatives; professional regulators and
societies; healthcare provider and purchaser organizations; voluntary agencies and
charities; ICT industry; and government.
Whether they are publicly or privately funded, healthcare systems have finite resources
to deal with potentially unlimited problems, resulting in cost constraints. Any new
technology has to bring clear improvement to the delivery of healthcare to justify its
introduction. Therefore, financial issues and incentives must be addressed to enable
governments and healthcare providers to adopt and implement PHIMS, and encourage
clinical staff and people to use PHIMS to improve health literacy and resulting health
outcomes. PHIMS can provide a mechanism to improve access to services and to
improve the quality of healthcare, while lowering costs, empowering consumers in
their healthcare decisions, and ensuring the privacy and security of personal health
information. Investment decisions should ensure that PHIMS are affordable,
implementable, usable and acceptable to key stakeholders.
To ensure success in enabling the adoption, use and benefits realization of PHIMS,
policymakers should recognise the need for continued financial support that is
reflective of the current economic landscape and the needs of citizens and the
healthcare community.
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Policymakers should consider that financial support or incentives to encourage the
adoption of PHIMS do not assure that investments can and will be balanced;
competition for capital may erode an organisation’s commitment in light of other
pressing needs.
In its analysis of National Health Service Funding in the U.K., the Wanless Report
recommends the level of spending on eHealth should be greater than three percent of an
organisation’s budget (Wanless et al 2007). Funding can be provided as a mixture of
national and local investments and incentives – supported by business plans and
focused on the underlying infrastructure and change management. Whatever the
funding model, individuals should be able to access their health and medical data
conveniently and affordably (Markle Foundation, 2005). Several key issues should be
considered and addressed in order to enable widespread adoption of PHIMS to
positively impact health outcomes.
Affordability - considers who will bear the cost and determine if the benefits will
provide the desired value. Systems must be both affordable and cost effective and
benefit the key stakeholders who will ultimately bear the cost.
Individuals will gain by being able to access and update their health information, and
easily communicate with their care providers (Lang, 2009). This may ultimately save
them time and reduce travel costs, in addition to improving the quality of their care
experience, encouraging use of PHIMS to meet personal health needs. Authorised care
providers will have access to more accurate, timely information for improved decision
making and improved quality of the interactions between the person and clinicians.
This has the potential to save the clinician time searching or communicating
information as well as improving the quality of care, encouraging use as part of the care
process. Organisations can provide new ways of delivering services, improving the
patient experience and interactions with the organisation, ultimately improving health
outcomes by enabling people’s involvement in their healthcare and decision making.
Meaningful use of ICT has, for example, been adopted as a means of U.S. government
investment in health IT investment under the 2009 American Recovery and
Reinvestment Act.
Implementability - will require investment in PHIMS that must be both ambitious and
achievable. As PHIMS is a relatively new area, incentives for adoption will require
investment in significant change management that is necessary for implementation.
This principle is recognised by the Royal Society (2006) in their recommendations
regarding successful adoption of ICT. Health managers should “ensure that sufficient
time is made available for healthcare professionals to contribute effectively at all stages
of design, implementation and evaluation of healthcare ICT” (The Royal Society, 2006,
p. 3). In addition, “Local and national health authorities should ensure that sufficient
funding and time are allocated to provide initial training and ongoing support for
healthcare professionals” (The Royal Society, 2006, p. 4)
Usability - requires standardisation and convergence of technologies to ensure the
vision of PHIMS is realised and supports the goals of integrated and co-ordinated
healthcare across the range of providers. PHIMS should allow innovation and
encourage good practice to enable widespread benefits to be realized for all users and
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improve quality of care. The need for convergence between national and international
standards is also recognised by the Royal Society (2006) and others.
Acceptability - supports the principles of transparency and fairness. Transparency
allows the identification of what is spent and by whom, which can open up the debate
on the priorities for spending decisions. Where government or public funding is
provided, it should be distributed to ensure equality, supporting a basic level of
provision and infrastructure cost, keeping in mind economies of scale. Where there is a
finite amount of funding, this must be linked with cost effectiveness.
To realise the adoption of PHIMS, the following financial strategies should be
addressed:
Investment in health IT should support better quality and improved
productivity if it is to be cost effective and funded
All stakeholders that are impacted by PHIMS should be assessed in terms of
cost benefits including patients, clinicians and the organization.
The functionality on which these benefits depend should support a win – win – win
situation. Ultimately, PHIMS should benefit governments and organisations who invest
funds, clinicians who encourage PHIMS to be used to support the care process, and
individuals who will benefit from quality healthcare.
Engagement of individuals
Goal: People are informed, involved and consulted as partners in the design and
delivery of PHIMS to enable appropriate and competent use.
Rationale: Engagement will ensure that PHIMS are designed to support peoples' needs
and reduce the risks of unintended and undesirable consequences.
voluntary agencies and charities; ICT industry; and government.
"The single most important factor in realising the potential of healthcare information
and communication technology is the people who use them. The end user of a new
technology must be involved at all stages of the design, development and
implementation, taking into account how people work together and how patients, care
giver and healthcare professionals interact" (The Royal Society, 2006, p 1). In this
case, the people who use PHIMS will be patients and the public, with support from
their families, caregivers and health professionals.
Why people should be engaged - The transition from provider-driven to a more patientdriven information management trend demands a shift in the power balance related to
development, involvement and engagement. This shift in power balance challenges
people at the individual level, at the group level and the providers themselves.
112
It is important to be aware of the asymmetry between professional knowledge and lay
people's experience, and information need and management. In addition, engaged and
well-informed people challenge providers in their encounters with patients and the
public. (Barnoy, Volfin-Pruss, Ehrenfeld & Kushnir, 2009)
The goal of engagement is that people are informed, involved and consulted as partners
in the design and delivery of PHIMS to enable appropriately designed systems and
competent use. This approach accounts for cultural considerations as, for example, the
collective versus individualism. However, people who belong to a culture which
expects to have access to general health information, do not always currently have this
possibility (Wang, Lau, Matsen & Kim, 2004). The rationale for engaging people is to
ensure that PHIMS support users’ expectations in their healthcare efforts and take into
account their own preferences and values. Expectations of empowerment and peoples’
competence to take control of their health situation, forces different approaches and
differentiation in involvement with development of PHIMS.
In addition to cultural aspects, personal characteristic will influence involvement. For
example, we need to take into account the aging population and ensure that their
engagement is adjusted to their competency, health status, possibility and wishes
(Hellesø, Eines, Sorensen & Fagermoen, 2009).
A key point related to engagement and participation in development is to ensure userfriendly PHIMS and to prevent unintended results. An overall issue to take into account
is confidentiality and security. Furthermore, PHIMS do not represent a single and/or
uniform system, which may create problems with interoperability between different
devices and systems. The system must be regarded as feasible and useful for those who
the system is aimed to serve. To what extent this means structured and coded content or
use of free-text or a combination of these approaches will depend on the need of the
individual and the purpose of the PHIMS.
Free-text and narratives can provide in-depth information and understanding of the
persons health trajectory and the characteristics of the healthcare system (Hellesø,
Sorensen & Slaughter, 2009), as well as being therapeutic because it allows a personal
style for interpreting an individual's health and illness (Johnson & Brennan, 2009).
Therefore it is extremely important to involve and consult persons who have the
knowledge and capacity to participate and advise.
Who should be involved and when - Engagement, involvement, and participation can be
of individuals, groups of individuals, or organisations. Stakeholders need to be
identified and their opinion and views must be shared and used. Engagement can last
for longer or shorter time periods. Long term engagement can be on a political and
strategic level. For example, persons representing a patient association provide one
avenue for engagement of groups with specific interest. To develop robust and userfriendly PHIMS requires discussions and awareness of what it means to represent an
association and who has the competency and qualification to be a representative. Shortterm participation can enable development of a specific tool/device for fulfilling a
defined purpose. Use of a participatory approach has been shown to be useful for
developing web-based individual care plans for the persons and their families (Bjerkan,
2009).
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Implications of engagement - Peoples’ engagement challenges the traditional
professional's role. Concerns about the impact of a patient's ability to read their health
record or their competency and capability with regard to information literacy are
examples of factors that cause barriers to engagement and deployment of PHIMS.
Peoples’ engagement must therefore build on trust. Involvement is expected to evolve
and take new forms in the future as a result of cultural changes, knowledge and
experience within the field.
Legislation
Goal: PHIMS should enable the sharing of health information in a safe and secure
manner with the person as the gatekeeper to ensure accuracy of information and
optimal decision making.
Rationale: People will be confident that the right information is available to them and
the nurse who has a legitimate relationship with the person in a timely manner to
support shared decision making and person centered healthcare.
government.
In the UK, the term "information governance" refers to the policies and practices in
place to ensure the confidentiality and security of the records of patients and service
users to help deliver the best possible care. It enables healthcare organisations to
comply with laws related to personal data. While different countries have different laws
governing data collection, storage, access and use, most laws will provide a framework
to protect the person to whom the data relates. If PHIMS are to meet necessary legal
requirements and the expectations of professionals and people, many questions and
practical considerations need to be addressed to ensure that any personal data is treated
with as much respect as the person themselves should be. Successful adoption and
utilisation of PHIMS will ultimately be influenced by how well the application of these
laws protects personal data while at the same time making the right information
available, at the right time and right place, to those who need to know. Apart from the
person themselves, those who “need to know” could include their family, care givers
and clinicians from a range of healthcare organisations, social care staff and voluntary
agencies.
The questions and practical considerations relate to confidentiality, privacy and
security of personal data. Each of these concepts means slightly different things,
however ways of managing them often overlap. Confidentiality means limited
disclosure or relevant sharing; privacy means the right of control over personal data,
while security relates to access control. Ownership and control are often considered the
most important issues with PHIMS and electronic records in general; this appears to be
governed by the model of PHIMS and whether it is provider-controlled or personcontrolled. While the person or their organisation might “own” what they enter, the law
often allows the person to whom the data relates the right to access and alter any
inaccuracies.
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Addressing confidentiality concerns requires consent models governing how data is
collected and shared. In relation to security, it is necessary that only authorised people
can access PHIMS, which requires identity and access management systems to be in
place - in other words, defining who has access, how they are identified and
authenticated. Even those with access will not need to see all of the information held
within PHIMS. To ensure appropriate privacy, role-based access protocols need to be
explicit about the role of the person and what information they can view, add or alter.
In the UK, the Information Commissioner recommends Privacy Impact Assessments
are undertaken on all projects that could present a significant risk to an individual's
privacy (Information Commissioners Office, n.d.).
Not all systems can be totally confidential, secure and private. They would probably be
unusable and of limited benefit. Recognising that risks are always present means that
there needs to be systems to monitor access and, where there is inappropriate disclosure
or access to information or poor quality data, some form of penalty must be available.
Risks and unintended consequences should always be assessed. This could include
assessing any negative impact on specific groups such as disabled or elderly people.
Failure to address these impacts could go against discrimination laws in some
countries.
The move to person-centered healthcare models that aim to empower people will
ultimately challenge the provider controlled model of PHIMS. However, rather than
think about PHIMS in terms of control and ownership, it might be more helpful to
think about how information can be shared safely with those who need access to it to
support both the person and the clinician in making optimal decisions. Where
appropriate, this may include a care giver or family member or another agency.
Ultimately, person-centered healthcare is about organisational, professional and
societal culture. Two cultural dimensions have the most influence in relation to
information governance: power distance and individualism/collectivism. Personcentered healthcare promotes a partnership between the clinician as a provider of care
and the person as recipient. This partnership is based on trust, with explicit rights and
responsibilities for both patient and clinicians, underpinned by professional standards
and education. Trust is potentially the most important factor in adoption and use of
PHIMS.
Professional Practice
Goal: It is a requirement of professional nursing practice to be able to foster a person's
adoption and use of PHIMS as a ubiquitous tool to support their health management
Rationale: Adoption and benefits of PHIMS are more likely to be realised when
PHIMS is used as a part of the care process and in accordance with the cultural and
personal preference of the person. This will impact on the role of the nurse as
knowledge worker.
academic organizations; and government.
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PHIMS has the potential to support health literacy through the provision of information
and, if provided as part of the care process, the potential to assist the individual to
understand and act on that information. The latter approach is essential to prevent the
creation of additional inequalities for those people who may be disadvantaged through
lack of skills, knowledge, ability or access to technology. It is also recognised that
clinician prompting is a significant factor to adoption of PHIMS by people. Therefore,
using PHIMS as part of the care process and integrated into clinical workflow could
support adoption and use and ultimately contribute to improved health literacy. PHIMS
is not only a tool for the person to manage their health, but also a new tool for the nurse
to enhance professional practice. It can support the nurse in her/his role as patient
advocate and knowledge worker. Hofstede’s (1988) cultural dimensions can influence
the nurse's professional practice. While person-centered health care has underpinned
many nursing philosophies, there are still challenges to support nurses utilising these
new tools. They require nurse leaders to:
support nurses’ work in challenging environments where citizens and patients
have a more active role in maintaining, completing and using their own health
information
work to enable nurses to develop the skills and knowledge to use PHIMS to
support and guide citizens and patients to manage and use their health
information
promote new working procedures in healthcare services
ensure nurses become familiar with and have the access to the latest
information concerning PHIMS and all related matters
recognise those patients who do not have the skills or opportunities to manage
and use health information and need the extra help and guidance of nurses.
Evaluation
Goal: Evaluate and measure progress and impact of PHIMS to support benefits
management, inform new policies and future eHealth developments.
Rationale: Evaluation justifies and gives direction for strategies, policies, plans,
investment and governance arrangements associated with implementation of PHIMS.
government.
PHIMS are still relatively new and not yet integrated into healthcare systems and care
processes in many countries. This means that experience and evidence from evaluation
are limited. The importance of the evaluation of eHealth is noted in a recent review
which concludes that “eHealth interventions have considerable potential to transform
the health sector, hopefully for the better. As with any other intervention, however, the
risk of harm exists, so policymakers, commissioners, clinicians, and patients alike need
to remain aware of this possibility.
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If we are to maximise the benefits associated with eHealth interventions whilst
minimising risks, we must be able simultaneously to evaluate eHealth interventions
while they are being designed, developed, and deployed” (Catwell et al., 2009, p8).
This view is reinforced by the Royal Society (2006) which suggests that only by
rigorous and thorough investigation will we learn how to enhance healthcare ICTs to
determine which specific systems actually lead to improved healthcare process and
outcomes. Evaluation needs to explore the sociological aspects of healthcare ICTs as
well as economic analysis. Government health departments should adopt an iterative
and incremental approach to the design, implementation and evaluation when
introducing new healthcare ICT (Royal Society, 2006).
Evaluation must be conducted to ensure new and continued investment in current and
future PHIMS development and implementation. Questions of concern include what
needs to be evaluated, how it should be done and who should be involved. Formative
and summative approaches are regarded as useful for evaluating PHIMS (Stoop,
Heathfield, de Mul & Berg, 2004). Formative evaluation focuses on the continuous
improvement of the system, while summative evaluation focuses on the effectiveness
of the system. This suggests that both the process and outcome must be considered and
the two approaches fit with the overall goal to evaluate and measure progress and
impact to inform new policies. An example of bilateral evaluation is the European
Union evaluation of economic impact at ten European sites (Stroetmann, Jones, Dobrev
& Stroetmann, 2006).
Summative evaluation is traditionally externally oriented, that is, it is initiated and
requested from those who have paid for the project or are responsible for it on a
political level. To apply summative evaluation, it is important to have defined goals
and expectations of the outcome. Two expectations are that eHealth investment should
give better quality and improved capacity. This type of evaluation may be of interest at
the governmental level or for healthcare organisations to be able to justify investments
by demonstrating benefits realization.
Formative evaluation serves to get knowledge about the different opinions that
individuals and groups hold on PHIMS; it addresses implications for the person(s),
quality aspects, satisfaction, life-cycle of systems, focus on improvements, etc. We can
learn about the processes and explore effects, for example, what does not work during
different phases of a project and deployment of systems. Both quantitative and
qualitative methods are recommended. A quantitative approach is seen as suitable for
establishing the size, extent or duration of certain phenomena.
It could also establish that a specific cause or intervention results in an expected effect.
Examples of different evaluation approaches are provided in the report of a study
evaluating the impact of specific home care web resources (Casper, Brennan, Burke &
Nicolalde, 2009), analyses of patients' information exchange with their provider
exploring post-hospital health problems for persons with cancer (Andersen & Ruland,
2009) or research into factors influencing personal health information patterns (Wibe &
Slaughter, 2009). Supplemental to the evaluation approach may be use of scenarios
(Meristö, Tuohimaa, Leppimäki & Laitinen, 2009).
117
A European study on the impact of eHealth (not PHIMS specifically, but including
some PHIMS functionality) suggests that given the right approach to implementation,
benefits from effective eHealth investment include better quality healthcare and
improved productivity (Stroetmann, Jones, Dobrev & Stroetmann, 2006). It also
suggests that on average 43% of the benefits are received by citizens and 52% by the
organisation. Once deployment and implementation stages have been completed, the
value of these benefits rises each year and exceeds the cost, usually very significantly.
Conclusions and Recommendations
A major European study identified key success factors for introducing ICT into health
care, including:
strong health policy and clinical leadership that guides a flexible and regularly
reviewed eHealth Strategy
commitment and involvement of all stakeholders
regular assessment of costs, incentives and benefits for all stakeholders
strong leadership and good organisational change management
multidisciplinary teams well grounded in ICT and clear incentives
organisational changes in clinical and work practices
long term perspectives, endurance and patience (Stroetmann, Jones, Dobrev &
Stroetmann, 2006, p.10).
Many of these success factors relate to the governance policies and organisational
culture issues highlighted in this chapter. To ensure that the future design, development
and implementation foster the adoption and use of PHIMS, we make the following
recommendations:
Key stakeholders should:
1) advocate and promote these governance goals for adoption in countries and
organisations
2) consider how policies and processes can shift the imbalance of the cultural
dimensions to work towards implementation of each goal, and
3) raise awareness and create mechanisms and opportunities for people to
understand and contribute to the design, implementation and evaluation of
PHIMS to support adoption and use, and enable person-centered health care
and health improvement.
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Personal Health Information Management Systems and
Education: Preparing Nurses to practice in a Wired World
Diane SKIBAa, Helena BLAŽUNb, Anna EHRENBERGc,
Heimar MARINd and Anne MOENe
a
University of Colorado Denver, USA
Faculty of Health Sciences, University of Maribor, Slovenia
c
School of Health and Social Sciences, Dalarna University, Falun, Sweden
d
Federal University of São Paulo, Brazil
e
Faculty of Medicine, Institute of Health Sciences, University of Oslo, Norway
b
Introduction
Nursing education and the nursing profession face many challenges today. The global
nursing shortage, the faculty shortage, the demand for different teaching strategies that
include emerging technologies and most significantly, the impact of the changing
healthcare environment, are all presenting challenges to nursing. One such challenge is
the incorporation of Information and Communication Technologies (ICT) and
informatics competencies at all levels of education, from undergraduate and graduate
programs to professional development and lifelong learning. Various driving forces are
encouraging the use of health information technologies (HITs), including personal
health information management systems (PHIMS) to provide safe and quality care. As
these technologies permeate the health care environment, it is essential that all nurses
have the necessary knowledge and skills to practice in a wired world.
There are several driving forces that serve as catalysts for educational change. First, the
health care environment is being influenced and impacted by the integration of health
information technologies into health care practice. Current and emerging health
information technologies are becoming commonplace in many health care institutions
and for others it is a constant discussion and part of their future strategic directions.
The movement to eliminate medical errors, improve patient safety and increase the
quality of care provided is facilitating the adoption of HITs. National, countrywide
initiatives, the growth of consumerism, increased access to the Internet and its impact
on globalization all serve as additional drivers of change. Second, access to the Internet
has given new life to people’s involvement in their health care. The democratization of
health information to patients and their families is allowing them to be more active in
their health decision-making. Web-based tools targeted to consumers are not only
changing their access to health information but also changing the nature of the
person/patient and health care provider relationship. A third driving force is the growth
of and reliance on evidence based practice that is inextricably connected to informatics.
In this first section, national initiatives, consumer movement and global adoption of
HITs are presented. Since 2000, numerous national initiatives across the countries are
facilitating the promotion of electronic health care records and the use of PHMIS. For
some countries, new opportunities related to integration of electronic health records are
the priority.
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For others, it is the adoption of both electronic health records (EHRs) and personal
health records (PHRs). No matter which scenario, the integration of health information
technology, especially personal health information management systems, are having an
impact on the practice of health care. As practice changes, it is important for education
to also change. Nursing education must examine how to prepare nurses to practice in
these new environments.
Global developments
What follows is a brief snapshot of major initiatives across the globe related to health
information technologies and in particular PHMIS. This is not a comprehensive
examination of the adoption of health information technologies; for a more complete
picture see the country reports in the following sections of this text. The snapshot
provided here is useful to get an understanding that as more health care facilities adopt
the use of Electronic Heath Records (EHRs), the nature of health care practice will
change. The ability to use health information technologies to guide practice will
necessitate a change in how education prepares nurses or other health care
professionals for practice. It is equally important to see that this movement towards the
use of health information technologies is happening across the globe and not limited to
only industrialized countries.
In Europe, the European Commission’s Directorate for Information Society and Media
has launched two major e-health initiatives regarding the EHR (E-Health Europe
Newsletter, 2008). The first addresses recommendations for developing interoperable
cross border EHRs. The second initiative covers the launch of the project Smart Open
Services (SOS). Project SOS involves 12 member states and aims to remove linguistic
administrative, technical and other barriers to make it easier for people to receive
treatment when traveling or living abroad. The SOS project includes participation from
Austria, Czech Republic, Germany, Denmark, France, Greece, Italy, the Netherlands,
Spain, Slovakia, Sweden and United Kingdom.
In Scotland, NHS National Services Scotland (2008) has developed a programme that
enables clinicians to examine people’s health information 24 hours per day, with the
person’s consent. In this way health professionals can make more accurate diagnosis
and treatment and can quickly collect important medical information that can save
lives. In addition, the National eHealth Programme has developed a Clinical eHealth
Toolkit to facilitate nurses, midwives and other health care professionals to engage in
eHealth initiatives (Clinical eHealth Toolkit, n.d.). The toolkit provides an opportunity
to share best practices within the national health care system.
In the United States, the Institute of Medicine reports on medical errors and the quality
chasm spearheaded efforts to examine the use of health information technologies to
insure patient safety and quality care (Kohn, Corrigan, & Donaldson, 2000; Committee
on Quality Health Care in America, 2001; Aspden, Corrigan, Wolcott, & Erickson
2004). There were also reports to examine how technology might be useful to improve
nurses’ work and help mitigate the nursing shortage (Page, 2004). These reports and
other factors precipitated the creation of the Office of the National Coordinator of
Health Information Technology. Federal initiatives were proposed that emphasized the
adoption of EHRs by all health care facilities by the year 2014 (Brailer, 2004).
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The initiatives also supported the development of a health information network for
sharing of data to support surveillance and faster transfer of research results. E-health
opportunities and the use of personal health records are also encouraged through these
initiatives. As summarized by Detmer, Bloomrosen, Raymond and Tang (2008), there
are three PHR models in the US: stand-alone, tethered and integrated. Stand-alone
examples include Microsoft’s Healthvault and GoogleHealth. The two US
organizations with the largest penetration of PHRs are the Department of Veterans
Affairs (http://www.myhealth.va.gov) and Kaiser Permanente. A recent review of
PHRs by the Medical Library Association and National Library of Medicine Joint
Electronic Personal Health Records Task Force (2008) identified 91 PHRs, most of
which were stand-alone products.
In Spain, there is a citizen centered health solution that contains the equivalent to an
EHR (Protti, 2007). This system is based on four underlying principles: a single health
record for each person; unified access to all services; including structured data of all
relevant information; and system development by health professionals and providers. A
fifth principle of costumer precedence in which people are not clients or costumers but
owners of the data is also evolving.
In Denmark, health care professionals have access to patient data with the EHR and
laboratory data through a Health portal (eHealthNews.eu, 2007). This portal also
enables patients to look up their personal health data, request doctor appointment and
request the renewal of prescriptions. As reported by the Computerworld Honors
Program (n.d.): “All Danish citizens have access to sundhed.dk, enabling patients to
communicate and patients and their families to get an overview of correct and updated
health care information, making the health care services appear close-by, open and
familiar. Additionally, every citizen has his own personal page (available upon
identification), which reflects the specific situation of this particular citizen”.
In Finland, there has been a long-standing commitment to e-health. The focus in the
last decade has been the development of a directory of patient record location
information. At the present time most municipalities and hospital districts are part of
the directory and the focus is on linking local and regional EHRs into the national
eArchive (EHealth Europe, 2009). In addition, there is a project that supports electronic
self-care services for citizens, allowing them to communicate with their health care
provider and also to schedule appointments.
In 2003, the Portuguese Parliament announced a National Action Plan for an
Information Society with the following objectives: to collect health information data of
patients; to increase the quality of health care services; to increase the efficiency of the
health care system; and to reduce costs for health care. Portuguese e-health policy is
divided into three action lines – health information networks, on-line health services
and patient smartcards (Ehealth Europe, n.d).
In Norway, there are a variety of projects related to EHRs and consumer access to
health information. A web portal “MyRec” connects health care professionals to many
hospitals and other health care institutions. As a part of this portal, there is
“WebChoice” that provides access to cancer patients and their families to help them
report and monitor their health symptoms and problems.
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The system also offers relevant resources to the patient and their family about the
disease and a forum where cancer patients can talk to other patients and discuss their
illness. Another project, “Kjernejournal”, enables sharing of EHR data among health
workers. “The Kjernejournal is created by copying the relevant part of the EHR to a
separate server with high availability and which allows other actors to contribute and
read data in an automated fashion. In this way the data is kept consistent and readily
available” (Torstein, Larsen & Kofod-Petersen, 2006).
Sweden recently launched the first stage of the Swedish National Patient Summary
project designed to facilitate the creation of an EHR (Reuters News, 2009). As a part of
the national IT strategy, partners in the project are IT vendors, InterSystems and Tieto.
This is the first EHR for Sweden and one of the first of its kind in the world. At the
beginning the programme, health care providers will have access to critical patient
information at any time and at any place. In this way clinicians will be better informed
for making further decisions regarding diagnoses, treatment and follow-up.
East Asian countries (Japan, Singapore, Taiwan and Hong Kong) have taken different
approaches to the implementation of EHR systems in their public health care systems
(Ghani, Bali, Naguib, & Marshall, 2008). Some have implemented systems on either a
local or national level. In Singapore, the use of ICT is widely accepted in the health
system and in the seven main hospitals. The first EHR implementation in Japan was
started by the Wakayama Medical Association, with the collaboration of Osaka
University and Wakayama Medical College. In 1994, they launched another initiative
within the Health Information Strategy 21 strategy to support quality and efficient
health care services for citizens.
Hong Kong’s approach to the EHR is different from other countries (Ghani et al,
2008). They started with building a solid infrastructure as a foundation, including
administrative and financial databases. Then, all hospitals and clinics were connected
with each other through a wide area network. This integration provides seamless access
to results in clinical areas.
In Taiwan, the goal of the National Information Infrastructure was to develop and
implement telemedicine services across healthcare facilities and levels. The EHR
strategy development started with bottom-up field projects followed by a realisation
that a strategic EHR framework was needed to maximise benefits. One such approach
was the National Health Insurance Smart Cards, known as NHI-IC cards. With the
NHI-IC, the existing paper-based health insurance cards were replaced with a card
capable of updating patient’s critical health records (Ghani et al, 2008).
It is apparent from this brief review that many countries concerned with providing safe
and quality health care to their citizens are installing EHRs in their health care
facilities. Several countries have national initiatives and have set target dates for the
adoption of EHRs by all facilities and healthcare providers. There are also initiatives in
the realm of PHIMS. Some countries have initiated research and development projects
addressing personal health records. In the United States, multiple companies are now
providing consumers with access to their own PHR. In some instances, insurance
companies have partnered with these companies to connect the PHRs to the EHRs
supported by health care facilities.
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Consumerism
Another important factor to consider when planning future educational programmes for
nurses is consumer access to health information. The Internet and mobile technologies
are providing people with instant access to health information that was once only
available to health care providers. In many parts of the world people have access to
sources of knowledge over the Internet although internet use varies greatly between
countries and regions. According to Internet World Stats (2009), about 75 percent of
the population of North America accesses the Internet, 60 percent in Australia and New
Zealand and 50 percent in European countries. Access is rapidly spreading over
developing countries with the greatest increase in the Middle East and African
countries - over 1,000 percent from 2000 to 2008.
The spread of Internet use means that patients may have more in-depth knowledge
about health maintenance, their disease and treatment options than the health care
professionals do. In addition, patients and their families have the possibility for
interaction with others in the same situation. Health care professionals have a broader
knowledge and have extensive clinical experience, but usually they do not have indepth knowledge in specific fields. Patients and families can be a driving force in the
transition to personal health information management systems as they are increasingly
being more knowledgeable about their particular disease.
This transition of knowledge challenges the traditional power balance within health
care, where health care professionals were in control of the knowledge and patients’
perceptions and preferences were less acknowledged. This shift may be seen as
threatening to clinicians and requires them to reshape their thinking about who has the
knowledge and who can make decisions.
The consumerism movement leads to professional demand for education and training to
use these knowledge resources, in order for professionals to be able to interact and
guide patients. A constraining factor in this development is that at the same time as
consumers became more knowledgeable and demanding, there is a need to establish
priorities in health care because of limited resources. Also, there is a potential for
consumers to become overwhelmed with the available information and knowledge that
may not always be helpful and lead to good decisions.
Nurses need to insure that all people have access to health information to aid in their
decision-making about their health and well being. The International Council of Nurses
(ICN) supports this notion of universal access to health information stating that:
“everyone has the right to up-to-date information related to health promotion and
maintenance of health and the prevention and treatment of illness. Such health
information should be easily accessible, timely, accurate, clear, relevant, reliable and
based on evidence or best practice” (ICN, 2008, p1).
The ICN statement also recommends that “Nurses and other health professionals
should acknowledge individuals’ rights to make informed decisions and choices about
how to manage their own health and to accept or reject health care or treatment” (ICN,
2008, p1).
125
As well as understanding and promoting access to information, nurses need to
understand how people are using technology to manage their health and to make
pertinent health care decisions. A recent study reported by Fox (2007) found that of
those patients with chronic diseases, at least “75 percent reported that their last health
search affected a decision about how to treat an illness or condition, compared to 66
percent of other e-patients” (Fox, 2007, p2). Engaged patients are also sharing their
stories online, posting advice about managing their disease and how to communicate
with their health care providers (Fox, 2007).
This study as well as others reported that engaged patients were also sharing their
“observations of daily living” (ODLs) on various social networks as well as in their
personal health records devices. According to a Health in Everyday Living EPrimer#3, the “collection and use of ODL information - which includes information on
such activities and experiences as sleep, diet, exercise, mood and adherence to
medication regimens - is one area that is genuinely user-directed, both in the kind of
information that is contained in the record and the health-related activities that stem
from it” (Robert Wood Johnson Foundation, n.d). Based on this evidence, two
important questions can be posed: are nurses aware of engaged patients and their
behaviors on the Internet? And are nurses preparing to be partners with people who are
actively engaged and knowledgeable about their health or their chronic condition?
Evidence-based practice
There is a strong movement for evidence-based practice (EBP) within health care
worldwide with the primary focus on evidence from research. But we also need to be
cognizant of patient preferences as an important pre-requisite for EBP. There is a need
to rethink what is considered as evidence. The knowledge that the patient contributes
about how they experience their disease and their symptom management is a form of
evidence that needs to be included in evidence-based decision making. Research-based
knowledge from different sources, collective expertise and accumulated experiences
from everyday living contribute equally and in new ways as evidence and content for
PHIMS. Given this context (the growing adoption of EHRs and PHRs on a global
level, increased access to health information and the growing engagement of people in
their health care), there is no doubt that the way nurses provide care will change
dramatically. The emergence of a more engaged population concerned about health
care decisions will provide many opportunities for the development of new models of
nursing care.
New models of nursing care
Technology is pervasive and present in all human activities; information is readily
available. As a result, people with chronic diseases are often better informed about
their everyday challenges and the last scientific developments related to their condition.
The engaged patient knows where to acquire information and gain knowledge. Given
this context for the future practice of nurses, person-centered partnerships capitalizing
on PHIMS will require models and approaches suitable for increasingly networked,
global and diverse care environments.
126
Person as partner in trajectories of care
Person-centered partnerships are characterized as trajectories with multiple forms of
participation, often managed at the discretion of the citizen’s situated preferences for
care and their desired (and changing) level of participation. As partners in care,
persons/patients are more often in charge of their personal health information
management. They can act upon and personalize choices reflecting value systems,
preferences, cultural and religious beliefs, available care programs, and reimbursement
opportunities. Emerging technologies enable changing structures of participation in
multiple sites – spatial and temporal – for care activity. Trajectories, as described by
Strauss (1975) and Strauss, Fagerhaugh, Suczek, and Weiner (1985) point to the
evolving nature of a person’s health and illness experiences.
Patient-centeredness and partnership-based care models are supported in increasingly
wired environments with informatics applications including PHIMS. In these
partnerships, acquired information about issues such as provider quality, diagnoses,
treatment alternatives, strategies to improve experienced quality of life, collect
observations of daily living and/or benefit of passive information gathering,
complement and augment provider perspectives on care.
The trajectories of illness and wellness intertwine with other aspects of life in
“seamless care paths”. The trajectories of persons and providers will intersect and take
new, unique paths (Ludvigsen, Rasmussen, Krange, Moen, & Middleton, 2007) and
provide a basis for the emerging, new practice models of the technology-enhanced
practice environments. With new roles and new responsibilities for personal health
management, the actual ‘division of labor’ shifts. Preparation of nurses at all levels
should expand and acknowledge the challenges of the new, symmetric relationships
where contributions reflect different perspectives of equal value, and additional cues
for new forms of decision-making.
Preparing for new practice models
In the area of changing, person-centered partnerships, some key elements in the
emerging practice models will be particularly important. Being involved in personcentered partnerships where the person’s trajectory of health and illness is at the center,
calls for care environments with multiple forms of participation. There will be
expanded communities of practice. Innovative solutions must be projected to address
complex problems such as: an aging population; increased prevalence of chronic
diseases; high costs of care delivery; and economic constrains to assure continuity,
quality, and cost benefits of treatments and care. In such practice models the
participants’ roles and responsibilities must balance in activities by consumers and
providers to appropriate and exploit PHIMS.
Future care and services require balancing ‘philosophy of care’ and ‘philosophy of
cure’ in new ways (Kim, 2000). This will lead to new models taking the multiple
players, their resources and contexts into active account. The new practice models
depend on patient activation in new ways, and value comprehensive, correct
information when needed, that is: “just in time” and at “point of need”.
127
This ties into cultural aspects of tradition, beliefs, and ethics. Participation in new,
PHIMS opportunities will contribute to expanded communities where the processes of
socialization and structures of participation change. Person-centered partnerships imply
decentralizing care where commitment to team work, enhanced communication,
collaboration and decision making to include situated preferences for participation,
engagement and commitment to patient’s health goals.
In summary, a caring relationship where the available and emerging PHIMS positively
influence partnerships rests on new care-relationships to enhance patient outcomes, and
for nurses to emphasize skills that demonstrate organizational agility in resolving
complex patient care and communication issues (Marin & Sasso, 2006). The
partnerships and their nature are likely to change over time, and future practice models
should demonstrate flexibility to balance symmetric-asymmetric relations, recognizing
that, at times, equality and equity in the partnership may not be possible, feasible or
appropriate.
Educational challenges in changing practice models – care environments
For nursing and nursing education at all levels, the new practice models represent a
shift in paradigm, where nurses’ roles and responsibilities will evolve from that of
patient advocate to contributor for patient learning and participant in the partnership.
Educational opportunities for nurses must be aligned with, assist or even drive the
process where consumers can evaluate and interpret good information, known for
quality, appropriateness, reliability, validity, as well as consistent with their needs and
value structures. In an increasingly wired world, person-centeredness needs to be tied
to and emphasized in the different initiatives to improve informatics competence.
The emerging citizen-centered partner models require shifts in continuing education
programs for clinicians, so that they are able to care for the patient/consumer in these
emerging technology-enhanced practice environments. There are significant challenges
for the education of nurses at all levels, not least of which is the readiness of nurses to
serve as partners in care (Skiba, 2009a). Nurses in all roles and at all levels must
incorporate informatics competencies, and act upon the new information management
demands in their practice models.
From an educational perspective this creates a multi-facetted, hybrid picture of needs
and requirements for knowledge, skills and attitudes. This implies expanding and refocusing nursing curricula at undergraduate, postgraduate and doctorate levels. The
content in the curriculum must contribute to shifting patterns of collaboration, with
nurses being aware of the patient’s needs, situated preferences and desired level of
participation. This requirement is in addition to the required competencies related to
ICT and informatics. Developing such competencies at the post graduate level will
require further enhancement of professional development programs including
continuous education, learning-at-work, as well as clinical ladder programs for nurses
and other healthcare team members.
128
Current challenges in nursing education
Nursing education is struggling to address the global nursing shortage (Oulton, 2006).
Nursing schools are constantly transforming their curricula and using many teaching
innovations to prepare more nurses while dealing with fewer nurse educators, fewer
clinical placements and less time (Skiba, Connors & Jeffries, 2008). In Europe, the
transformation of higher education is asking academic institutions to prepare students
at a baccalaureate level in three years (Gaston, 2008). In many countries, nurse
educators are using human performance simulators to provide students with more
experiences with clinical scenarios. In several states in the United States, the regulatory
nursing board (State Boards of Nursing) is allowing a certain percentage of clinical
placements to be substituted with practice using human performance simulations.
Across the globe, educators are experimenting with a variety of technologies to
encourage critical thinking and provide students with necessary skills to learn how to
learn. Web-based coursework is becoming commonplace and many nursing programs
are being offered in solely online environments. Several schools, such as the University
of Wisconsin at Oshkosh and Tacoma Community College, are providing clinical
experiences and coursework in the virtual world of SecondLife (Skiba, 2009b).
Despite the many accomplishments of faculty teaching with technology, there are
relatively few countries that have fully integrated ICT, informatics and PHMIS into the
nursing curriculum. There are several reasons for this lack of integration; one major
factor is that educators lack the necessary awareness, knowledge and skills to practice
in a wired health system (Murphy et al., 2004). Most were educated prior to the use of
health information technologies in health care institutions and those who are not
practising in an electronic health care environment are usually not aware of the
changing consumer population and how HITs will impact the nature and delivery of
nursing practice.
A second factor is the lack of access to health information technologies within the
academic setting (Fetter, 2008). It is difficult to change the way one teaches and what
one teaches when one does not have access to the appropriate tools. A third reason for
the lack of integration is the confusion around the differences between computer
literacy, information literacy and informatics. Many nurse educators equate health
informatics with IT skills. For example, in a study for the US National Library of
Medicine, most educators confused computer literacy (creating a slide presentation)
with informatics competencies (Thompson & Skiba, 2008). They also confused
information literacy (searching the web) with informatics competencies. Without a core
set of competencies that are agreed upon by the nursing profession, it is difficult for
educational institutions to determine what is or is not important to be integrated into the
curriculum.
There have been major strides made in several countries to emphasize the incorporation
of informatics knowledge and skills into the nursing curriculum. In Europe, several
countries have initiated the European Computer Driving License (ECDL) and the
Health Supplement module (Kouri, 2009; Moen & Bratlie, 2009; Proctor, 2009).
Several other countries have initiated preparation of nurses in the areas of ICT
competencies, information literacy and informatics Bond, Lewis & Joy, 2009; Clark,
129
Baker & Baker, 2009; Barton & Skiba 2009; Trangenstrain, Weiner, Gordon &
McArthur, 2009 ; Liu, Hou, Tu & Chang 2009).
In the United States, there have been several initiatives that have catalyzed efforts to
require that all nurses have informatics competencies and that these are incorporated
into both pre-licensure and graduate education. In response to these efforts, the Institute
of Medicine (IOM) recommended that all health care professionals have five core
competencies (Greiner & Knebel, 2003). One of these core competencies is the use of
informatics to mitigate error, promote safe and quality care and to facilitate clinical
decision-making. A second US response is the Technology Informatics Guiding
Education Reform (TIGER) Initiative. This grassroots effort created a vision and three
and ten year strategic plan to better prepare nurses to practice in increasingly automated
informatics-rich health care environments (Technology Informatics Guiding Education
Reform, 2007).
As a consequence of these initiatives, several organizations responded to the call for
preparation of nurses to practice. Among these, the Quality and Safety Education for
Nurses (QSEN) Project (Cronenwett et al., 2007) has developed knowledge, skills and
attitude competencies for pre-licensure nursing students related to the IOM five core
competencies and to safety. The American Association of Colleges of Nursing has
included information management requirements in their Essentials of Baccalaureate
Education and in their Essentials of the Doctorate of Nursing Practice programs (see
Box 1).
Box 1 – Resources for integration of ICT and PHIMS competencies into nursing
American Association of Colleges of Nursing Essentials of Baccalaureate Education
www.aacn.nche.edu/Education/bacessn.htm
American Association of Colleges of Nursing Essentials of the Doctorate of Nursing Practice programs
www.aacn.nche.edu/Education/essentials.htm
National League for Nursing Position Statement, Preparing the Next Generation of Nurses to Practice in
a Technology-Rich Environment: An Informatics Agenda
www.nln.org/aboutnln/PositionStatements/index.htm.
Nursing Informatics Australia, Position Statement: Integration of Nursing Informatics into Nursing
Education www.hisa.org.au/system/files/u1/cs_Australia__Position_Statement_-_Education.pdf
Prescription for nursing informatics in pre-registration nurse education. (Bond & Proctor, 2009).
In Australia and the United States, professional nursing organizations have written
position statements about the integration of informatics into the nursing curriculum
(Box 1). Nursing Informatics Australia, a special interest group of the Health
Informatics Society of Australia, published a position statement that calls for the
following actions:
integration of nursing informatics content and learning experiences within the
nursing curriculum
support for faculty development
establish a standardized curriculum
130
ensure accreditation board includes as a core competency, and
develop more graduate programs with specialization in nursing informatics.
Bond and Proctor (2009) have published a prescription for nursing informatics in
which they outline the four major competencies needed in all pre-registration nursing
curricula:
1.
2.
3.
4.
basic skills for information management
information needs of professionals and patients
information governance framework, and
information quality (Bond & Proctor, 2009).
Conclusion
It is apparent that there is a growing use of health information technologies to support
the delivery of health care and nursing practice. With the growing emphasis on EHRs
and PHMIS, there will be the development of new models of nursing practice. The
context of health and the changing health care systems are global in nature and will
require transformation of care across the globe. Thus, it is important for nursing
education to begin to prepare nurse that can use health information technologies that
provides safe and quality care. There is a need to prepare nurse to deliver care in new
and emerging models of care. Person-centered care that incorporates the person as
partner will become the new care model. Although there is progress across several
countries in the preparation of nurses to practice in the wired health care environment,
it still remains an elusive goal across all levels of nursing education. The majority of
the efforts focus on ICT skills with limited focus on informatics and PHMISs
competencies. Given this context and these assumptions, it is important to set a bold
goal for nursing education and to take action on the recommendations listed below.
Goal for nursing education in support of PHIMS:
All levels of nursing education and professional development efforts across the
globe need to integrate ICT and informatics including PHIMS into their curricula.
This integration should include not only didactic content but also experiences in
clinical practice.
Recommendations
To reach this goal, the following recommendations are set forth:
Faculty and professional development programs that will provide the
knowledge and experiences with informatics need to be developed and
implemented.
In each country, an appropriate strategy is needed to coalesce nursing
leadership to develop a vision and plan for insuring all nurses have the
necessary knowledge and skills to practice with engaged citizens in a
technology rich environments.
131
Educators should work with their local health care institutions, in particular
nursing practice, to incorporate the use of PHIMS into their mission and
vision of health care.
Academia and clinical practice in collaboration must develop strategies to
ensure that nurses have the opportunity to access and use PHIMS to engage
citizens in their health care.
The Education Workgroup of the Special Interest Group on Nursing
Informatics of the International Medical Informatics Association (IMIA-NI)
should convene a panel to develop an educational initiative template to be
shared with member countries and collaborating organizations that ultimately
will accomplish the overall goal of curriculum integration of ICT, informatics
and PHIMS.
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PERSONAL HEALTH INFORMATION
MANAGEMENT AROUND THE WORLD
National Examples
137
Australia
Robyn COOK
Faculty of Nursing and Midwifery, University of Technology, Sydney
Background
Australia has a population of approximately 21.5 million, spread across a land mass of
7.7million square kilometres. The majority of the population resides along the eastern
and southern coastlines with smaller rural communities inland. The centre of Australia
is sparsely populated mainly with indigenous communities. Providing universal
healthcare is a challenge in a large geographically dispersed country, with a small
population. Australia is a federation of states (six states and two territories), where both
Federal and State governments have shared responsibility for funding and delivering
healthcare. Universal health care provision is through Medicare which is funded by a
mix of taxation and government subsidy. Both Federal and state governments set
healthcare policy and fund healthcare with based on respective responsibilities for
health care provision. Healthcare is provided by both private and government
organizations in a range of settings including hospitals (762 public hospital and 552
private hospitals), aged care, community health, general practice facilities and by
individual healthcare providers.
Key health care issues include the increasing incidence of chronic disease and an
ageing population. There is significant disparity in the health status of the indigenous
aboriginal community to the general population with a 17 year age difference in life
expectancy due to a range of health and socioeconomic issues.
State of Deployment of Personal Health Information Management Systems
The landscape for the deployment of personal health records or personal health
information systems (PHIMS) in Australia is not clear, however there is mounting
support for such initiatives to improve and ensure the delivery of high quality, safe
health care. This is reflected in one of the key visions from the National Health and
Hospitals Reform Commission (2009) that in “2012 every Australian should be able to
have a Personal Health Record that is owned and controlled by the individual,
including designating Health Care Providers that can access the record and determining
when and how the personal health record is stored, backed up and retrieved”.
According to the national e-health strategy (Commonwealth Government, 2008),
achieving this aim will require continued significant investment in a range of
foundation programs including:
significant government funded e-health strategic investment for health care
facility-based clinical information solutions that can provide relevant
information that is securely transmitted to the personal health record
138
consistent legislation for information protection nationally and provision of
the national broadband service (available all across the country) by the Federal
Government (this will require bipartisan commitment to these initiatives)
funding the National eHealth Transition Authority’s Individual Personal
Health Record Program. This program includes a number of initiatives
providing the foundation for personal health records, some of which are listed
below:
o privacy blueprint for unique health identifiers and individual health
records.
o standards for secure messaging including Service Orientated
Architecture, Web Services and XML standards.
o unique health identifier for all Australians and associated
authentication regimes.
o unique health care provider identifiers and associated authentication
regimes.
o completion of eHealth Solutions compliance framework for
interoperability.
o national eHealth information standards including clinical data
standards and terminologies, medicines terminology and technical to
support interoperability and secure data transfer
In addition, effective provision, uptake and utilization of personal health records
requires:
community awareness campaigns to increase community understanding of the
benefits and operations of personal health records
stakeholder reference groups to identify and address the range of stakeholders
concerns with the implementation, delivery and maintenance of personal
health records, not least the privacy, confidentiality and security of systems
care provider financial incentives and accreditation to ensure that clinical
information is available and can be securely transferred to and from the
personal health record, and
strengthening vocational and tertiary programs for health care providers to
understand the benefits of personal health records, operational aspects of
utilizing personal health records including legal frameworks and professional
responsibilities including effective and consistent clinical documentation.
What is not clear is Australians’ individual uptake of currently available personal
health records such as Google or platforms such as Microsoft Vault. Other smaller
vendors are now offering personal health record solutions including Global Health Hot
Health solution (www.hothealth.com.au) and Medtech’s Manage My Health solution.
Commercial developments demonstrate that there is a market for these products,
however information on uptake is not readily accessible. One aspect worth noting is
that many of these solutions are operating without adequate privacy and security
frameworks, especially a legislative framework. This situation is placing a person’s
health information at risk of disclosure or as a component of identity theft.
139
In the 2008, an Australian Government Summit 2020 identified a “Health Book” - a
person’s individual longitudinal record - as a key initiative for Australia. However this
has yet to be turned into a government policy initiative.
These examples are all evidence of strong strategic support for the provision of
personal health records including PHIMS. The challenge is converting the vision to
reality and the timely development and delivery of a coordinated approach that does
not further fragment a person health information and communication across the health
sectors.
Over the past five years there have been significant successful pilots of electronic
health records solutions (summary longitudinal health records combining summaries
from a range of providers) implemented by state or territory governments, including
Northern Territory Aboriginal Health Record, New South Wales (NSW) Healthelink
and the Queensland Electronic Health Record Pilot. The NSW Healthelink project is an
electronic health record solution focused on chronic care and early childhood records.
The key aspect of all electronic health record initiatives is the collation of an individual
health summary from a range of providers as well as the ability of the individual to
record personal health information, including specific data recordings such as blood
glucose levels, blood pressure etc for monitoring chronic disease conditions. Support
from these types of records is also demonstrated by the success of paper based record
systems such as NSW Health My Health Record, currently in use for mental health
clients and early childhood services. This is a paper record that the person holds and
includes summaries of visits to health professionals, care plans and personal health
recordings according the areas under monitoring (NSW Government, 2008).
Key issues for nursing in design and use of personal health records
General challenges in designing and using personal health records that nurses can either
lead or contribute begin with managing consumer expectation. Nursing is well placed
to provide advice and support to consumers on the use of personal health records and
key aspects to be aware of when participating in these initiatives. An important role of
the nurse is to assist consumers to assess if the systems are safe and secure, and that
privacy is addressed. Secondly, nurses, as the predominant health care providers in the
community especially for people with chronic disease, can collaborate with the person
to demonstrate the value of personal health records and assist with the effective use of
systems. In this environment a considerable amount of data that the person is recording
would be reviewed by the nurse as well as discussing with the person on managing
health issues to the care plan.
Thirdly, nurses need to take a lead role in defining the type of health information that
could be captured within personal health record. This includes defining common
records structures and data standards for the information. This will ensure
comparability of information as well as interoperability if any information is to be
shared amongst systems. For nurses in Australia to participate requires representation
at many of the initiatives of the National E Health Transition Authority (NEHTA),
which is responsible for defining all the e-health standards for Australia.
140
A beneficial model of the personal health record is one where the information is a
combination of personally entered health information as well as summary information
from their range of health care providers. The fourth challenge is for nursing to ensure
that discharge summaries or event summaries contain important nursing
information. The key to this is to also ensuring nursing information is represented in
the source systems e.g. electronic medical records solutions. Finally one of the key
roles for nursing is to educate the community in the effective use of Personal Health
Record and PHIMS.
Conclusion and agenda for action
Nursing needs to take a very active role in development and application of personal
health information systems to ensure that the solutions benefit the consumer, support
safe healthcare delivery and demonstrate the value that nursing brings to the
community. For these goals to be achieved requires the following actions:
1.
Nurses should actively engage in the debate and development of personal health
records (and electronic health records) as a key initiative in improving the health of
the community and delivery of safe effective health services. Key to this is
promoting a wellness focus of health. Nurses need to ensure that the personal
health records include all aspects of a person’s health including wellness
assessments, wellness promoting activities such as diet, exercise and other lifestyle
factors in conjunction with health interventions.
2.
Nursing needs to be actively engaged with the not only with the information
technology / solution providers, but also government and other providers who are
responsible for providing these solutions to the community to ensure all health
information is included in the solution (including nursing information).
3.
To effectively be able to manage and share nursing information, nursing has to
take a lead role in defining the nursing data definitions. Given that these initiatives
are global and access to the personal health record may take place in a global
context, it is preferable that this work be co-ordinated at a global level. This is one
initiative that could be driven by the Nursing Specialist group of the International
Medical Informatics Association (IMIA NI), in conjunction with other related
organisations.
4.
Nursing informaticians should contribute to activities that ensure interoperability ,
through contributing to data definitions of health concepts and the development of
self care concepts.
5.
From an Australian perspective, another key component of interoperability is the
development and implementation of a range of national health identifiers, unique
person identifiers (to consolidate all health information), unique health provider
identifier (for secure access and authentication of contributions of information) and
unique health organization identifiers (for secure transfer and authentication of
information). In this arena, nursing informaticians should contribute the design and
implementation of the national health identifiers.
141
6.
There needs to be convergence of a personal health record and national / state
electronic health records and electronic medical records. In the clinical setting it is
critical to have access to all relevant information. Nurses need to be active
participants in the debates and discussions on bringing together a total solution for
personal health records to avoid disparate information sources which fragment
care, impact on effective communication of health information and co-ordination
of care.
References
Commonwealth Government. (2008). National EHealth Strategy. Retrieved from
http://www.health.gov.au/internet/main/publishing.nsf/Content/National+Ehealth+Strategy
National Health and Hospital Reform Commission. (2009). Person Controlled Electronic Health Records.
Retrieved from
http://www.nhhrc.org.au/internet/nhhrc/publishing.nsf/Content/BA7D3EF4EC7A1F2BCA25755B001817EC
/$File/Person-controlled%20Electronic%20Health%20Records.pdf
New South Wales Government. (2008). My Health Record, Mental Health Pilot Evaluation Report Summary
and Distribution Protocol. Retrieved from www.health.nsw.gov.au
Bibliography
NEHTA HealthBeyond Presentation 2009 Available at http://www.healthbeyond.org.au/downloads
Kavanagh, J. (2009). Personal Health Records Engaging Comsumers through E Health. Presentation at
Healthbeyond Conference 2009. Retrieved from http://www.healthbeyond.org.au/downloads
Pinskier, N. (2009) From Clinician to Consumer: Accessing your health data. Presentation at HealthBeyond
Conference 2009. Retrieved from http://www.healthbeyond.org.au/downloads
Information about Australia available at:
http://www.abs.gov.au/AUSSTATS/[email protected]/Web+Pages/Population+Clock?opendocument?utm_id=LN
http://www.about-australia.com/facts/geography/
http://www.aihw.gov.au/publications/hse/hse-71-10776/hse-71-10776-c02.pdf
http://en.wikipedia.org/wiki/Health_care_in_Australia
142
Brazil
Heimar F. MARIN
Brazil is the largest country of South America and the fifth largest one in the world, with its
8,514,876 sq km covering almost half (47.3%) of the South American continent. The
population, around 200 million inhabitants, has an enormous cultural, social, economic,
meteorological and geographical diversity. These characteristics stimulate development and
utilization of the information and communication resources in the most diversified
scenarios and contexts.
Related to the personal health information management systems (PHIMS), in summary, it
can be said that there is no such resource available for most Brazilian citizens. There have
been some initiatives; the first took place in 2007 when a German enterprise initiated a
promotion to commercialize a product (Life Sensor) in the Brazilian market. Several other
companies have since made similar resources available but there is no consensus on the
systems and no political support from the Ministry of Health. Although the electronic
health record is evolving and different versions are available in some parts of the country,
there is no single policy for developing a national personal health information management
system. According to the Brazilian laws, the patient record belongs to the person (he/she is
the owner) and the hospital and/or clinicians have the right to keep it – the technical
responsibility is given to the health organization.
Despite the lack of a national policy, resources are being deployed to promote
interconnection among providers and clients/patients and several portals for consumer
education are available. Since 2006, an important project has been underway in the country:
the RUTE network (http://rute.rnp.br/). This infrastructure project was developed by the
University Network of Telemedicine and Telehealth Care of the Science and Technology
Ministry, which is coordinated by the National Network of Teaching and Research and the
National Program of Telehealth Care for primary health care. The RUTE project integrates
teaching hospitals and the basic health care networks.
Currently, the RUTE network integrates around 57 health care institutions throughout the
country and hundreds of basic health care units in their respective states. It covers all
Brazilian states and handles multi-professional integration in the health care of the
community. Above all, the network has improved accessibility to care and health
information for the populations of remote and difficult access regions. The RUTE project
also opened an ongoing channel for the development of research, education and interchange
of specialized health knowledge.
143
This has resulted in the growth of scientific collaboration, enlargement of health care
training courses and continuing education, including the introduction of e-learning and mlearning, and the integrated evolution of telenursing procedures on a national scale (Dias et
al., 2009). Another national initiative is DATASUS (the Department of Informatics of the
National Health System – www.datasus.gov.br) developed the HOSPUB system, which is a
hospital information system that is being distributed to the public hospitals in the country.
Today, the system is implemented in 156 health facilities in 14 states.
Interoperability is a fundamental attribute to be considered by developers and in 2002, an
important project to assure interoperability was initiated by the Brazilian Society of Health
Informatics and the Brazilian Medical Council. The main objective of this project is to
provide system certification through which any software in health care can be accredited
according to defined requirements for national standardization (www.sbis.org.br).
Nursing professionals are taking advantage of the national political tendencies to develop
telemedicine in the country in order to develop resources and use the available
infrastructure to deliver nursing care to distant patients through the use of
telecommunications technologies.
Reference
Dias, V. P., Witt, R. R., Silveria, D. T., Kolling, J.H., Fontanive, P., de Castro Filho, E. D., & Harzheim, E.
(2009). Telenursing in primary health care: report of experience in southern Brazil. Studies in Health Technology
and Informatics, 146, 202-206.
144
Canada
Lynn M. NAGLE
Lawrence S. Bloomberg, Faculty of Nursing, University of Toronto, Canada
Canada encompasses 3.9 million square miles and has approximately thirty-two million
residents (Statistics Canada, 2006a). The population includes significantly diverse
cultural communities within the large urban centers. There is also a significant First
Nations, Inuit, and Aboriginal population within several of the provincial and territorial
jurisdictions. Additionally, many Canadians reside in remote and rural communities
with limited access to health services. The country is bilingual English/French,
however large numbers of new immigrants from Asia, the Indian sub-continent and
from Latin America have increased the need for healthcare provision in multiple
languages. The number of Canadians whose mother tongue is not English or French
neared 6.3 million in 2006, up 18 percent since 2001 (Statistics Canada, 2006b).
The national health insurance program is designed to ensure that all residents have
reasonable access to medically necessary hospital and physician services. Instead of a
single national plan, Canada has a national program that is composed of 13 interlocking
provincial and territorial health insurance plans, all of which share common features
and basic standards of coverage. Canadian health services are delivered by more than
400,000 health care professionals within more than 700 hospitals, primary and
community care settings, and long-term care facilities (Canada Health Infoway, 2007a).
While health service delivery is supported by a combination of public and private
funding, the public-sector share of healthcare spending has remained relatively constant
since 1997, at approximately 70 percent (Canadian Institute of Health Information,
2008). Nonetheless, as in other nations around the world, Canada’s health care
spending continues to rise year on year.
There are an estimated 9 million Canadians living with a chronic illness such as
diabetes, heart disease, and hypertension (Health Council of Canada, 2007).
Furthermore, the management of chronic diseases accounts for between 40 and 70
percent of all health care expenditures thus warranting a particular emphasis on
improving the management of same.
Although not widely documented, anecdotal evidence suggests that Canadians have an
interest in having access to and managing their health information. A recent invitational
symposium focused on “one patient – one record” captured the views of patients and
health care personnel about patient access to electronic health information (Patient
Destiny, 2009). More than 80 percent (n=31) of the patient participants expressed the
opinion that they should be able to access their own health information without having
to wait for their doctors’ approval and consent. Further, 97 percent (n=38), perceived
value in accessing information such as lab results and consult notes to enhance their
ability to manage their healthcare; however, underpinning this view was the need for
support and education to help them to understand the content and information (Patient
Destiny, 2009).
145
Canada Health Infoway – Building Canada’s Health Infostructure
Canada is in the midst of delivering the functional components of an interoperable
Electronic Health Record (EHR) for all Canadians. Established in 2001 Canada Health
Infoway is an independent, not-for-profit organization funded by the federal
government. Infoway jointly invests with every province and territory to accelerate the
development and adoption of electronic health record projects in Canada. Significant
progress has been made in achieving this vision with federal investments of more than
$2.1 billion to date (Canada Health Infoway, 2007a). Infoway believes that investments
in key aspects of “infostructure” will have direct benefits to Canadians improving the
quality, accessibility, portability, and efficiency of health services delivery across the
continuum of care (Canada Health Infoway, 2008a). Infoway’s mandate includes:
1.
2.
3.
4.
5.
strengthening and integrating health services through electronic health records
empowering the public by increasing health information access
addressing issues of privacy
developing and implementing standards, and
assuring the adoption of emerging technologies through private and public sector
collaboration (Canada Health Infoway, 2008a).
Strategic investments have been directed to each of the provinces and territories in
support of initiatives that provide the foundation for an interoperable pan-Canadian
EHR. Most Canadian jurisdictions have the beginnings of the basic infrastructure in
place to support an interoperable EHR including: client registries; provider registries;
and drug, laboratory and diagnostic imaging information systems. In addition, national
public health surveillance system has been adopted by every jurisdiction. Presently,
there is substantial investment being directed to the deployment of primary care
Electronic Medical Records (EMR) to support physician practice and a growing nurse
practitioner practice across the country.
Infoway was also a charter member of the International Health Information Standards
Development Organization (IHTSDO) in 2006. The development and deployment of
health data and technical standards are germane to the evolution of an interoperable
EHR and Infoway recognizes the centrality of this work in the achievement of its
mission. To date, there has not been a national strategy developed for the advancement
of personal health information management (PHIM). Nonetheless, recognizing the
evolving emphasis on consumer empowerment, Canada Health Infoway has developed
a pre-implementation certification process for consumer health platforms (Canada
Health Infoway 2008b). The few efforts identified cross-country have been directed to
providing limited patient access to health information through portals developed by
individual health care organizations (Canada Health Infoway, 2007b).
Beyond these initiatives, a few pilot initiatives have focused on the development of
health information management tools for patients such as kiosks for self-registration,
ER triage (Canada Health Infoway, 2006), and self-care and personal health
information management and monitoring tools such as My Chart™ (Sunnybrook
Health Sciences Centre, 2008) and MedforYou (McGill University, 2009).
146
Infoway recognizes that PHIM tools are rapidly emerging and has begun to explore
future linkages with the “pan-Canadian” health infostructure access layer: “A number
of technology vendors have expressed interest in creating solutions that will equip
Canadians with the technology they need to view their medical data. Working with
Infoway and its partners will help ensure the solutions available to Canadians will
leverage the progress made in implementing electronic health record projects across
Canada. Using technology solutions that are compatible with Infoway's blueprint will
ensure patient privacy and security provisions are adhered to” (Canada Health Infoway,
2008b).
Relative to PHIM tools, Infoway differentiates between consumer health platforms and
consumer health applications, as follows:
Consumer Health Platform - An electronic system which provides a secure,
interoperable environment and personal health information database. The platform
enables a range of consumer health applications, most often from different vendors, to
run and interoperate. These two elements together allow a consumer, as data custodian,
to store and manage their personal health information and other health-related data. The
Consumer Health Platform also facilitates the sharing of data by the consumer with
clinicians, family members and other authorized individuals, as well as with other
applications and health information systems (Electronic Health Records, Electronic
Medical Records and Hospital Information Systems).
Consumer Health Application - An electronic solution that provides functionality for
the consumer, including the collection, retrieval, management, use and storage of
personal health information and other health-related data. This could include
applications commonly known as personal health records and patient portals. If
connected to a Consumer Health Platform, the consumer health application provides
access to the services provided by the platform and the personal health information
stored in the platform (Canada Health Infoway, 2008b).
Beyond the developments related to ehealth infostructure foundations, in certain
regions, Canada has also deployed extensive network infrastructure being utilized for
the delivery of telemedicine services. One relatively unique initiative that has been
highly successful is the development of a portal for the provision of informational
support to family caregivers (Victorian Order of Nurses, 2008). Directed to supporting
the more than 2,500,000 family caregivers across Canada, this portal affords them
informational, emotional and material support from health professionals and other
family caregivers.
In summary, the directions for PHIM have yet to be determined throughout Canada.
Current initiatives are primarily organizational or clinical program or populationcentric (e.g., My Chart in use with oncology patients in a single organization).
Although there are many issues to be addressed, efforts need to be presently directed to
the following:
national and jurisdictional PHIM strategy development including the
engagement of Canadian citizens
147
consideration of the extensive cultural/ethnic/language diversity
the unique needs of rural versus urban citizens – technical and practical
consideration of the current barriers to ICT access for all Canadians
development and adoption of PHIM data and technical standards
interoperability and leverage of existing health information
communication technologies
governance of PHIM related to funding and long-term sustainability.
and
Key Nursing Issues
Engagement - To date, nursing has had limited input to the national vision for the “panCanadian” electronic health record, but this must change. The Canadian Nurses
Association (CNA) and the Canadian Nursing Informatics Association (CNIA) must
continue to advocate for the engagement of nurses in the eHealth agenda across
Canada. The CNA has published several position papers on issues of nursing practice
related to nursing data standards, and information and communication strategies to
support nursing practice. Canadian nurses also need to participate in the discussions
regarding the evolution of PHIM initiatives in Canada. Perhaps the development of a
position paper is warranted in the near term.
Education – The education issues are two-fold: 1) the education of consumers in
PHIMS, and 2) the education of student nurses and practicing nurses in accommodating
and incorporating PHIMS in their practice. This is but another dimension of the
“informatics gap” which currently exists in a majority of nursing schools in Canada.
Revamping curricula to address this gap should consider PHIMS as an important
consideration. Consumers themselves will need guidance and support in the use of
PHIMS; it will not supplant the need for nursing expertise.
Scope and Standards of Practice – The professional regulatory bodies will need to
consider this emerging dimension of nursing practice and consider the implications for
the scope and standards of practice. The profession will need to determine whether the
evolution PHIM warrants an expansion or modification to the existing scope and
standards. Additionally, the introduction of PHIM may necessitate the development of
new health policy directives.
Agenda for Action in Canada
1.
2.
3.
4.
5.
advance the engagement of nurses in PHIM developments – practice and
policy
develop a national position paper focused on nursing and the implications of
PHIM;
incorporate strategies to address the educational needs of consumers and
nurses in the advancement of PHIM;
engage the regulatory bodies in discussions of the implications of PHIM on
the scope and standards of nursing practice;
continue to network with international nurse colleagues through organizations
like the IMIA-NI to exchange and derive learnings that may inform the
Canadian landscape of PHIM.
148
Conclusion
Many technical and policy barriers will be overcome to accommodate consumer
linkages to providers, hospitals, and pharmacies – not the least of which are issues
related to privacy and security. PHIM tools have the potential to enable individuals and
families to more effectively manage their well being by informing choices and
interventions, monitoring outcomes, and facilitating improved chronic disease
management. However, realizing the potential of PHIMS will also require that
consideration be given to citizens’ needs for computer competency, internet access, and
health literacy (Kahn, Aulakh, & Bosworth, 2009).
References
Canada Health Infoway (2006). Kiosks a boon to triage nurses, ER patients. Retrieved from
http://www.infoway-inforoute.ca/lang-en/about-ehr/ehr-success-stories/kiosks-a-boon-to-triage-nurses-ander-patients.
Canada Health Infoway (2007a). Vision 2015: Advancing Canada’s Next Generation of Healthcare.
Retrieved from http://www.infoway-inforoute.ca/lang-en/working-with-ehr/health-care-providers/nurses
Canada Health Infoway (2007b). Online patient portal opens new doors. Retrieved from
http://internet.infoway-inforoute.ca/lang-en/about-ehr/ehr-success-stories/online-patient-portal-opens-newdoors.
Canada Health Infoway (2008a). Corporate Business Plan 2008-09: Paving the way to collaborative care.
Retrieved from http://www.infoway-inforoute.ca/lang-en/about-infoway
Canada Health Infoway (2008b). Consumer health platforms – Preimplementation certification. Retrieved
from http://www.infoway-inforoute.ca/lang-en/working-with-ehr/solution-providers/certification/consumerhealth-platforms.
Canadian Institute of Health Information (2008). National Health Expenditure Trends, 1975 to 2008.
Retrieved from http://secure.cihi.ca/cihiweb/dispPage.jsp?cw_page=AR_31_E&cw_topic=31
Health Council of Canada (2007). Why Health Care Renewal Matters: Lessons from Diabetes. Retrieved
from http://www.healthcouncilcanada.ca/docs/rpts/2007/HCC_DiabetesRpt.pdf
Kahn, J.S., Aulakh, V., & Bosworth, A. (2009). What it takes: Characteristics of the ideal Personal Health
Record. Health Affairs, 28(2), 369-376.
McGill University (2009). MUHC forms strategic relationship with medical.md so that Quebecers are the
first to be empowered with health and wellness tools. Retrieved from
www.mcgill.ca/newsroom/news/item/?item_id=107640.
Patient Destiny (2009). One Patient – One Record: Report from the April 21, 2009 Symposium. Toronto,
Ontario: Patient Destiny.
Statistics Canada (2006a). 2006 Census: Portrait the Canadian Population in 2006. Retrieved from
http://www12.statcan.ca/census-recensement/2006/as-sa/97-550/p2-eng.cfm.
Statistics Canada (2006b). 2006 Census: Languages. Retrieved from
www41.statcan.gc.ca/2008/50000/ceb50000_000-eng.htm.
Sunnybrook Health Sciences Centre (2008). My Chart. Available at
http://www.sunnybrook.ca/content/?page=mychartlogin_learnmore.
Victorian Order of Nurses (2008). VON Caregiver Portal. Available at http://www.caregiver-connect.ca.
149
England and Wales
Anne CASEY
Widespread use of information and communication technologies (ICTs) is seen as the
most important advance that the national health service (NHS) in the United Kingdom
(UK) can make towards providing high quality, patient centred care. Personal health
records, owned and managed by the health consumer are increasingly seen as part of
that advance, as are other ICT resources that enable personal health management. The
NHS in all four countries of the UK countries have published ehealth strategies (see
box 1 below) that include central provision of personal health information tools and
some level of access to central or provider held records. A growing number of primary
care providers have the potential to provide or are already providing personal access to
the primary care record. As in other countries, health advice and personal health
records are also supported by a number of independent / commercial organisations.
Examples of PHIMs Deployment
The national ehealth programme in Wales started trials of My Health Online at a
number of general practice surgeries in different parts of the country in October 2007.
Patients at each of these surgeries are using the internet to book appointments and
request repeat prescriptions. Selected groups of patients have the opportunity to access
their own health records online. These pilots are the first stages of a plan to provide
each person registered with the NHS in Wales an electronic individual health record.
Similar functions are provided at the national level in England. All residents who are
aged 16 or over and have a valid email address can register for a HealthSpace account
(www.healthspace.nhs.uk/). They can apply for an advanced account which will allow
them to access the centrally held Summary Care record - an extract from the primary
care record – although the spread of these summary care records is limited at present.
Healthspace has four main functional areas with plans to extend in near future
including: being able to make hospital appointments; managing health and lifestyle by
‘keeping track of information like your weight, blood pressure, cholesterol levels and
medications’; calendar and address book to ‘keep track of appointments and events, or
the address book to store your NHS contacts like your GP, dentist or local pharmacy’;
and links to NHS Choices, a knowledge store with information on health and general
conditions such as asthma.
The next development is a ‘Communicator’ tool, which will enable patients to carry out
e-mail consultations with GPs and other clinicians. So far, used by limited numbers of
people but the plan is to sign up 4 million patients by 2014. The long term aim is to
provide patients with a secure way of accessing their transactions with the NHS from
anywhere in the world.
150
Security and authentication has been an ongoing issue and makes registration to use the
service less attractive to potential users: the process for activating an advanced account
involves patients presenting three forms of identification confirming their address,
which must be the same as the address held by their GP. They are then issued with a
log in card and receive an activation key by post.
Other national initiatives such as NHS Direct support personal health management with
online and telephone health advice (www.nhsdirect.wales.nhs.uk/). Media groups have
also addressed the personal health information management agenda, for example, the
BBC provides advice on its website on ‘finding trustworthy health information and
support online’ (www.bbc.co.uk/health/talking_to_your_doctor/home_internet.shtml).
Patients across the UK are beginning to access their primary care records, made
possible because of full computerisation in this sector. A good example of how this is
benefiting patients can be found at the Haughton Thornely Medical Centres
(www.htmc.co.uk/) where patients can access all the information about them, make
appointments, order repeat prescriptions, and access health information and decision
support tools. According to general practitioner Amir Hannan, on-line access to GPheld health records for patients must be based on the 'partnership of trust'. He has
reported that such access results in increased health literacy, better concordance,
improved accuracy in the records, and a trusting adult to adult relationship that itself
improves health. Despite the wide availability of information and tools to support
personal health information management, most people in the UK do not yet have online
access to their records and are confused about how to manage information about their
health. According to Smith (2009), most people have not even considered online
access to provider records. Until recently, the process of getting access was difficult but
the main cultural barrier in the UK seems to be that public and professionals focus on
negatives such as threats to security and confidentiality rather than on the benefits.
Nursing Issues related to the design and use of PHIMs
Person-centred care is the central philosophy that underpins the purpose and
responsibilities of nursing (Royal College of Nursing, 2004a). According to the RCN,
the nurse of the future will work ‘in partnership with patients and communities as an:
information navigator; information interpreter; decision-making facilitator; patient
empowerer’ (RCN, 2004b). Preparing nurses for these roles is the key challenge in
relation to personal health information management. Other challenges include:
Working with multiple models. Pagliari (2004) describes the current and
possible future models such as: the patient viewing records in a clinical
setting; personal web space with access to provider records and space for own
information; an internet portal through which patient manages all health
information online, communicates with providers, accesses decision support,
networks with others etc.
Costs, access and choice. The ‘digital divide’ and the potential to increase in
health inequalities for those who are unable or choose not to engage in
personal health information management
151
Risks and risk management. There are many hazards which must addressed
with appropriate standards and safeguards including: access restrictions;
identity management and authentication; protecting personal information from
others including family members; semantic interoperability; the quality of
knowledge and information resources supporting patient decision making.
Outcomes and benefits measurement. Patient reported and other measurements
need to be developed and validated so that practice can be evidence based.
Awareness, education and change management for patients, public and
professionals.
Conclusions
National policy agendas and ehealth strategies are driving the design and development
of personal health information management systems across the UK. The two priority
actions for the nursing profession are: practice standards for supporting personal health
information management and education of nurses. Evidence based practice standards
will help to address the challenges listed above. Changes to nurse education are
required so that nurses of the future are competent to work with individuals, groups and
communities to identify health goals, recognising where ICTs can help achieve those
goals and then integrate the use of ICTs appropriately into the care process.
References
Pagliari, C. (2008). Alternative PHR models & potential benefits [PowerPoint slides]. Retrieved from
www.nuffieldtrust.org.uk
Smith, R. (2009). BMJ Blog: Demand online access to your medical records, says Richard Smith. Retrieved
from
http://blogs.bmj.com/bmj/2009/02/18/demand-online-access-to-your-medical-records-says-richard-smith/
Royal College of Nursing. (2004a). The future nurse: the RCN vision. Retrieved from
http://www.rcn.org.uk/downloads/aboutus/policy_and_consultations/policy_unit/imported/fn-vision.pdf
Royal College of Nursing. (2004b). The future nurse: the future patient. Retrieved from
www.rcn.org.uk/downloads/aboutus/policy_and_consultations/policy_unit/imported/future-patient.doc
Box 1 - Sources for information about UK national ehealth strategies and programmes
Northern Ireland - Department of Health, Social Services and Public Safety. HPSS ICT
Programme: from Vision to Reality. 2005.
www.dhsspsni.gov.uk/hpss-ict-programme-summary.pdf
Wales - Welsh Assembly Government. Informing healthcare.
www.wales.nhs.uk/ihc/home.cfm
England - NHS Connecting for Health. The National Programme for IT.
www.connectingforhealth.nhs.uk/
Scotland – see overview of PHIMS in Scotland in this text
152
Finland
Pirkko KOURIa, Kristiina JUNTTILAb, Kaija SARANTOc and Anneli ENSIOc
a
b
Savonia University of Applied Sciences Kuopio Finland
c
Introduction
The population of Finland is over 5.3 million. The Finnish national health care system
represents the Nordic Welfare Model which is based on tax-financed public provision
of a large number of social and health care services: child care, basic and advanced
education, hospital care and health services, and care for the elderly. Characteristics of
the model are that citizens have the access to basic welfare services independent of
income and employment status. The Finnish system offers universal coverage for a
comprehensive range of health care services delivered mainly by publicly owned and
operated providers reimbursed through general taxation. All members of the care
delivery team share respect for the knowledge and experience of patients and provide
many-sided information for shared decision-making and control.
Finland has strong emphasis on ICT use in all administration branches. Simultaneously,
as a member state of the European Union (EU), Finland follows EU development work.
Five years ago the EU’s eHealth Action Plan called for the member states to draw up
their national eHealth Roadmaps by the end of 2006 (EU, 2004). Finland’s eHealth
Roadmap is a continuation of the work on national strategies that was started in 1996.
It gathers together the main policy definitions and achievements of the Finnish
development work from the last decade and outlines future challenges. It is also a
continuation of the work which has been done during recent years to build up a
nationwide operational network for health services emerged as a part of National
Health Project 2003-2007 (Iivari & Ruotsalainen, 2007).
Our common objective is to secure access to information for those involved in care,
regardless of time or place, in both public and private sector. This requires: a
comprehensive digitalisation of patient data; development of the semantic and technical
compatibility of the electronic health record systems in regard to the entire content of a
record; development of the national health care infrastructure and information network
solutions; identification and authentication solutions and electronic signature; and
maintaining of information on the Internet that supports decision-making. According to
the Finnish policy definitions, the storing and use of health information is based on
networked corporate data with a high data security.
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General Targets for Health Information Management at National Level
KanTa – National Archive for Personal Health Data
The Government has decided that the core of the national ICT infrastructure for social
and health care will reside in a national digital archive for patient documents
(eArchive) to ensure the availability of real-time patient information. KELA (The
Social Insurance Institution of Finland) is responsible for KanTa – an archiving service
system and associated services development. It will include a national public key
infrastructure system for health care professionals. The legislation dealing with the
creation of a nationwide level IT infrastructure for health was launched in year 2007
and is expected to be finished by the end of 2011. All the public care providers must
join in. Private care providers can choose between the national archive and paper
archiving.
KanTa services consist of a patient data archive and citizen online access to personal
health information, and electronic prescriptions. With online access to personal health
information, patients/clients have an enhanced ability to look up personal information
and to supervise its use. Individuals over the age of 18 have online access to personal
information stored in the Prescription Centre and the electronic archive of personal
information. For example, everyone can use the system to check one’s vaccination
status; or people can request a summary of their electronic prescriptions. Finally,
people can request the pharmacy or their doctor to provide a summary of their
electronic prescriptions. In future, an intelligent medical information system might be
able to provide treatment recommendations and warnings about potentially harmful
drug interactions.
SAINI project
The national SAINI-project (interactive electronic services for citizens) was
coordinated by the Finnish Innovation Fund together with the Ministry of Social
Affairs and Health, and other national organisations, operators, companies and
financing institutions in health care and information and communications industries.
The SAINI report creates a framework for supporting the public in their independent
promotion of their own health as well as supporting flexible electronic transactions
within the health care service system (Valkeakari, Forsström, Kilpikivi, Kuosmanen &
Pirttivaara, 2008). The SAINI service concept is a combination of centralised and
decentralised electronic services that are connected to data systems and registers in a
customer-focused and functional manner. These include appointment services,
transmission of laboratory results, prescription renewals, payment and compensation
services and various types of information services. These services are used to support
the citizen’s decision-making in health-related matters as well as interaction and
information flow between professionals. The SAINI concept aims to fulfil the
requirements set for user-friendly electronic services. The idea of a ‘one-stop-shop’
was a strong guiding principle: one place where all relevant services provided by the
state and municipality, including healthcare, can be obtained. The services will enable
self-service for citizens in those functions, where appropriate.
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Model of Finnish Nursing Documentation
In Finland, eHealth developments have a strong nursing impact. There have been two
major projects related to documentation model development: the HOIDOK/HOIDATA
project and the eNNI project (http://www.enni.fi). The main development project is the
Model of Finnish Nursing Documentation (http://www.vsshp.fi/fi/4519), based on
standardized terminology and the nursing process. The nursing documentation model
consists of four phases of the nursing process: needs assessment, determining of
nursing needs and nursing care aims, planning and delivering nursing interventions,
and the evaluation of outcomes. Terminologies are used for nursing diagnosis and
interventions to facilitate retrieval of data. The Finnish Care Classification (FinCC) is a
validated translation of the Clinical Care Classification (CCC, formerly the Home
Health Care Classification). FinCC consists of 19 Care Components describing the core
of care, and these are divided into major categories and subcategories of nursing
diagnosis and nursing interventions.
Different hierarchical levels of the classification can be used for documenting nursing
care, together with narrative text when relevant. Each nursing diagnosis requires an
expected outcome which is expressed using three qualifiers (improve, stabilize, and
deteriorate). The outcomes of care are documented by using the same qualifiers. The
model for the Finnish Nursing Documentation also includes the intensity of care, and
the discharge summary which is assembled from essential data of the episode of care.
Citizen Focused Health Care
Oulu SelfCare and Technology Healthcare Centre pilot project
Along with development projects, such as Oulu SelfCare and Technology Healthcare
Centre pilot project, nurses are learning new ways to cooperate with citizens. The
‘Technology oriented’ healthcare centre acts as a test-bed. The Oulu project activates
the citizens’ role and responsibility in health care processes and offers alternative,
reliable tools to get information and communicate with health care services. The
objective is to form a new service concept, which offers the citizens a self controlled
way to respond their own health and diseases, to get guidance and information and to
communicate with their own health centre using a simple and reliable electronic service
platform. The health centre has a user interface with rights to use patients’ health cards.
Service use is free for citizens but they need their own Internet and equipment. In
addition, the citizen’s self care health card includes personal health information,
electronic messaging and appointments, laboratory results for the 13 most common
samples. Citizens can save measures such as PEF, blood pressure, blood sugar, weight,
and record health diaries. They can search for locations of health care organizations
and apply online. The card provides access to information about medication, health,
disease and nutrition, with videos and simplified language to enhance health literacy.
This new technology service will be tested and reported by the end of 2009. The
desired outcome is a national service model, which could be adopted in other cities.
155
Health library
One important aim in Finnish health policy is to develop services for citizens and
strengthen their empowerment. Practically, this means access to adequate information
and counselling. The citizen should be given information about his or her illness and its
treatment, particularly medicines, in an understandable way. There are two major
national service providers for this information. Firstly, in 2006, to improve clinicians’
and patients’ access to health information, the Finnish Medical Society Duodecim built
an internet portal - Terveyskirjasto (“Health Library”, www.terveyskirjasto.fi) - for the
public. The portal contains thousands of patient-centric articles concerning diseases and
treatments, and many municipalities and hospital districts have linked this portal to
their own websites. In 2007, the “Health Library” received about 20 million requests
for articles, and the portal is becoming increasingly popular (Teperi, Porter,
Vuorenkoski & Baron, 2009).
HealthFinland
In May 2009, the national citizen’s health information portal - HealthFinland Portal - a
channel to reliable health information for Finnish people - was released. This portal is a
national semantic publishing system and will provide Finnish citizens with reliable, upto-date information about health. It will support people in making health decisions
which are based on the evidence-based information. The content for the portal is
produced by research institutions, expert bodies and the authorities, as well as the nongovernmental organisations working in the field of health and health promotion.
Finding the information is made easy by offering one address and one common user
interface to the service. The portal supports the common objective of the EU to
improve the citizens' access to the high-quality health information
(http://www.seco.tkk.fi/applications/tervesuomi/ui-presentation.html ).
HealthFinland Portal utilizes semantic web technologies. Publications, guides and
Internet services are produced with many different techniques and provided by
different institutions and organizations. However, through semantic web technologies,
it is possible to make these contents compatible and machine-readable. The semantic
web technology enables a global view to distributed contents and it also enables
concept-based information retrieval. The system consists of three parts: a centralized
service of health ontologies with tools, a semantic content creation channel based on
several distributed health organizations, and an intelligent semantic portal aggregating
and presenting the contents from intuitive and health promoting end-user perspectives.
The portal implementation is based on Semantic Web technologies developed by the
National Semantic Web Ontology Project (FinnONTO - http://www.seco.tkk.fi/). The
National Institute for Health and Welfare is responsible for operating of the portal with
the financing of the Ministry of Social Affairs and Health in Finland.
MyWellbeing
MyWellbeing is based on the notion of a citizen as an empowered and fully informed
partner in health and wellbeing services. The main goals of this project are to: identify
the needs of citizens and how they can become the foundation for different health and
wellbeing services; and identify how life changes, such as pregnancy or retirement,
should be considered when different health and wellbeing service concepts are defined.
156
As a result of the project, “the Coper”, a digital support tool for personal health and
wellbeing management, was built. MyWellbeing aims to provide a solution by which
citizens can better cope with life situations and concerns extending beyond health care
and including such matters as insurance, taxation, and day care for children. The Coper
is tested in different technologies, such as personal computers, mobile phones, and
partner company solutions, to gain platform independence so the citizen can select the
most suitable service options.
A sub-project of MyWellbeing, called “Family-Coper”, aims to study the Coper’s
promotion of the wellbeing and health of one specific group: childbearing families and
families with a small baby, maximum two years of age. Family-Coper will offer
families information related to health and welfare, and help them find information from
both public / private health and wellness service providers and voluntary organizations.
Family-Coper uses the social networking Ning-platform (http://about.ning.com/).
Simultaneous individual empowerment and communality of families, such as forming
and maintaining peer groups, are the goals of this project. With the help of Coper,
researchers are studying how to personalize information to family needs, how peer
groups will be composed and how they act, and how the digitalized service system
works. New service models contributing to civic-oriented health and wellness services
and greater interaction between families and health care professionals are anticipated.
(http://www.it.abo.fi/cofi/omahyvinvointi/index.php?id=70 )
Future Developments
In Finland, development of Personal Health Records is in the early stages. It has begun
with the creation of various portals and other channels of information. Existing and
future electronic tools for communication and data transition between health care
workers and their patients/clients require new approaches also in nursing. Patients’
participation in decision-making concerning their health and care will emphasize
further evidence-based practice, utilization of research, IT-related competences, and
individual consideration of the patient’s abilities and preferences in receiving and
accessing health information.
References
European Union (2004) e-Health - making healthcare better for European citizens: An action plan for a
European e-Health Area. Retrieved from
http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=COM:2004:0356:FIN:EN:PDF
Iivari, A., & Ruotsalainen, P. (2007) eHealth Roadmap - Finland Ministry of Social Affairs and Health's
Reports 2007:15. Retrieved from
http://www.stm.fi/en/publications/publication/_julkaisu/1056833
Lindberg DA, Siegel ER. On assessing the impact of medical information: does MEDLINE make a
difference? Methods Inf Med 1991; 30: 239–40
Ministry of Social Affairs and Health, (2009) Promoting Patient Safety Together. Finnish Patient Safety
Strategy 2009–2013. Drawn up by the steering group for the promotion of patient safety set up by the
Ministry of Social Affairs and Health, Helsinki 2009. 24 pp. Publications of the Ministry of Social Affairs
and Health, Finland 2009:5. Retrieved from
http://90plan.ovh.net/~extranetn/images/news_and_events/psfinlandjulk2009_5promotingpatientsafetytogeth
er.pdf
157
Ministry of Social Affairs and Health, (2008) National Development Plan for Social and Health Care
Services. Kaste Programme 2008–2011
National Nursing Documentation Project in Finland 5/2005 - 5/2008. Retrieved from
http://www.vsshp.fi/fi/4519
Nurminen Markku I. & Meristö Tarja (eds.) (2009) The MyWellbeing Project. Intermediate Report I – The
Coper in Use by the Citizen? (available only in Finnish ) Retrieved from
http://www.it.abo.fi/cofi/omahyvinvointi/assets/images/OHV_raportti_1.pdf
Sahala H. (2005) Project Plan for Promoting the Use of Information Technology in Social Services. Stencils
of the Ministry of Social Affairs and Health; 2005:1. (available only in Finnish).
http://www.stm.fi/julkaisut/nayta/_julkaisu/1064517
Salonen AH, Kaunonen M, Astedt-Kurki P, Järvenpää AL & Tarkka MT. (2008) Development of an internetbased intervention for parents of infants. Journal of Advanced Nursing 64(1), 60-72
Teperi, J., Porter, M., Vuorenkoski, L. & Baron, J. (2009) The Finnish Health Care System: A Value-Based
Perspective. Sitra Report 82. Retrieved from
http://www.sitra.fi/fi/Julkaisut/OhjelmienJulkaisut/teho/terveydenhuolto.htm
Valkeakari, S., Forsström, F., Kilpikivi, P., Kuosmanen, P. & Pirttivaara, M. (2008) SAINI – Electronic
Healthcare Services Concept Road Map for implementation in Finland. Retrieved from
http://www.sitra.fi/fi/Julkaisut/OhjelmienJulkaisut/teho/terveydenhuolto.htm
158
Japan
Satoko TSURU
School of Engineering, University of Tokyo, Tokyo, Japan
In 2007, the population of Japan was 126,085,000 with 1,089,818 live births and
1,108,334 deaths. The natural increase of -18,516 for that year is indicative of the fact
that the total population is decreasing. The leading cause of death is malignant
neoplasm (343,000 per annum), second is heart disease (184,000) and third is
cerebrovascular disease (126,000) (Ministry of Health, Labour and Welfare, 2009).
There are 7,785 general hospitals across the country but many are small in size; only
428 have more than 500 beds and 721 have between 300 and 500 beds. The ratio of
acute, short term admission to long term admission is 6:4, and government is
promoting policies to change this ratio to 4:6. Length of stay is longer than in the USA
and European countries, which is a major issue from the viewpoint of healthcare cost.
The government is driving forward with measures to strictly reduce the length of
patient stay.
There is a need to balance the problem of rising health care costs with the challenge of
providing high quality care and treatment. It is necessary to prevent unnecessary or
ineffective medical treatment and ensure the delivery of high-quality, evidence based
medical treatment. Addressing these challenges can be assisted by accumulating and
analyzing information on what care and treatment is delivered for individuals with
particular health conditions. However, management systems supporting the generation
and use of the personal health information are not yet well developed in Japan. A
summary is provided here of the current situation in Japan. Issues of concerning
personal health information management systems are presented and nurse's role
described.
It seems that the Japanese people have not considered the idea of keeping their own
personal health data somewhere and managing it themselves. However, in-patients and
people with chronic diseases are often knowledgeable about their consultation history,
their disease, laboratory results, treatment etc. and see this as important health
information. In general, individuals keep any documents passed to them by the hospital
but they simply file it somewhere.
They do not arrange the content or use the information to manage their health
condition. Some health care professionals recognize the importance of the personal
health information management systems but recognition that it is also the place where
the diagnosis and treatment record and the nurse's record are managed is low. There are
few discussions concerning the meaning and the value of the "Record" of healthcare
services and although such discussions about the nursing are increasing, they are still
only at a surface level. Personal health details are recorded in both preventive health
care settings and in the medical treatment areas in Japan. The aim is to identify
preventive needs at an early stage and to treat health conditions at the early stage.
159
However, the management system that links the personal health data of each area does
not yet exist.
Health Examination Result Information
The computerization of health examination results is well advanced in Japan. All
organizations are required to carry out annual checkups and provide health guidance
and standardization of the checkup items is encouraged with the overall aim of
reducing overall medical expenditure. The history of an individual's health examination
results can be referred to when the organization doing the checkup is the same.
However, when the health examination organization changes, for example, if the
person changes jobs, linking the individual's data becomes difficult. In general, when a
person consults a physician for a health examination, the previous year's data is
referred to and printed. Health examination is often carried out by using the printed
slip. It is difficult to obtain data that shows a mid/long-term healthy tendency when it is
done in this way and the doctor’s judgment is not recorded. Important health problems
may be missed.
There are two types are of systems evolving in Japan for storing personal health
information. One is where data are accumulated in the electronic record medium that
the individual owns. The other approach is where data are accumulated in a central
server and accessed when necessary. The system searches for the personal health data
that exists in different servers; batch referencing is done and linking becomes possible.
However, challenges such as retrieval, delays for standard maintenance and security
make this approach impractical at present: the project is only executed in a model area
at present. It is legally possible for health examination results to be held in a small
electronic storage medium, such as a USB storage device, and for the individual to
carry their own health information. This approach has been tried in various places but
the method of operation has not been well designed, for example, the recording
procedure and the setting of the data input person.
Hospital Information
The consultation history, treatment, and outcomes of hospital care are important
personal health data. The person producing this information may be a doctor or a nurse.
It is important to recognize the following as personal health data: essential patient
information; doctors’ and nurses’ orders; execution and results of orders. A
comprehensive tool for recording and storage of personal health data would cover the
following information:
health insurance card data: essential information such as name, date of birth,
address, occupation
specific health information: various pocketbooks (maternal and children
health handbook, diabetic pocketbook, infant heart failure pocketbook, and
various disease pocketbooks)
record of health examination: date, type of examination, results
judgment of health examination (medical necessity)
medical treatment consultation record: consultation date, disease name,
content of treatment, and treatment result.
160
Challenges
The following inter-related challenges need to be addressed to progress with personal
health records and systems in Japan:
at present, much information is recorded on paper and there needs to be a
person responsible for converting it into electronic data
there is no standard terminology for managing coding of electronic data
data is narrative rather than structured
comparison is difficult because of the lack of standardization
recorded information is not secure
recorded information lacks accuracy
it is not clear what should be recorded, when, by whom and who should
confirm the content
electronic data exists together with data on paper
there is no standard for important management indicators for managing the
state of the patient.
nobody observes by using the value of the management indicator.
The quality of the recording of personal health data is negatively affected by a number
of factors. Firstly, the record does not become the object of the medical treatment fee
and the present EHRs contain limited data on the person’s health. Few doctors
recognize the electronic record is for personal health data. Information on health
examination is coded but observation information is free text. Finally, the difference in
the quality of the record keeping depends on the person in charge.
Implications for Nursing Concerning Design and Use of PHIMS
Nurses are present wherever personal health data is produced and they are
knowledgeable about the importance of timely recording. When the management item
standard and the management algorithm are visible in the system, the nurse picks up
the personal health data according to the standard, and can execute the input and
review. It is preferable to design personal health information management systems and
actual operation with the nurse taking the central role. It is essential to ensure that
information is input accurately to produce each individual person’s health record.
To support the development of safe, effective PHIMS, the Nursing Special Interest
Group of the International Medical Informatics Association (IMIA-NI) should
undertake the following activities:
- ensure the development of educational courses concerning PHIMS
- develop teaching materials and the syllabus for national implementations
- coordinate feedback on the progress, evaluation, and outcomes of leadership
training programs and educational activities related to nursing informatics
- develop and maintain the networks to support the above and so that experience
and resources can be shared internationally.
Reference
Ministry of Health, Labour and Welfare (2009) Statistisc
http://www.mhlw.go.jp/english/database/index.html
& Other
Data.
Retrieved
from
161
Korea
Hyeoun-Ae PARK
Healthcare information is scattered among health the care facilities that patients have
visited throughout their lives, and is often recorded in different media. Electronic
medical record (EMR) systems are currently one of the prime transformers of health
care information management in Korea. They have been shown to provide greater
accuracy, efficiency, and significant cost benefits over paper-based systems. As the role
of consumers increases in health management, personal health records (PHRs) that
allow individuals to access and coordinate their lifelong health information are being
introduced. The PHR systems offer an integrated and comprehensive view of the health
information of an individual, including the information recorded at different health care
facilities and information that consumers generate themselves. The PHR enables
consumers to compile and maintain their own health records. These PHRs will continue
to flourish as the related ubiquitous computing technologies evolve.
Access to information and communication technology
As a result of the rapid growth of its online and telecommunication sectors, Korea has
developed into one of the most well-connected countries in the world. By the end of
February 2009, there were 46 million mobile phone subscribers in Korea. According to
statistics published by the Organization for Economic Co-operation and Development
(OECD), there were more than 15 million broadband subscribers in Korea in June 2008,
which translates to 31.2 subscribers per 100 inhabitants, ranking Korea 7th in the world.
As at October 2007, 94.1 percent of all households in Korea had broadband access,
ranking Korea first in the world for this measure.
In 2007, the Korean Ministry for Health, Welfare, and Family Affairs (MOHW)
announced a national strategic plan for the implementation of National Health
Information Infrastructure. One of the visions of this plan is to provide healthcare
consumers with healthcare information anytime and anywhere through personal health
management services connected to electronic health record system of healthcare
facilities. Based on this vision, development of PHRs, self care services and evidencebased healthcare information services were proposed.
Personal Health Information Management Systems (PHIMS) in Korea are provided by
different organizations such as the government sector, private business groups and
health care facilities. Also, PHIMS in Korea comes in different formats such as webbased services (accessed through the Internet that store consumer’s information in a
central place), hybrid services that allow consumers to store the information on their
personal computer (with or without a thumb drive transfer of data to carry around), and
transfer the information to a web-based account.
162
Most of systems run by government organizations and private business groups are webbased and most of systems run by the health care facilities are hybrid. Examples of
PHIMS run by government organizations include HealthiN (http://hi.hnic.or.kr)
maintained by the National Health Insurance Corporation, Health Guide
(http://www.hp.go.kr) maintained by the MOHW, and Immunization Information
Program maintained by the Korean Center for Disease Control. These web-based
PHIMS provide consumers with health/disease information, health assessment,
customized health management services such as hospital and pharmacist information,
chronic disease management services, health care utilization history, and guides to
physical examination.
Examples of PHIMS run by private business group are HealthKorea maintained by the
UBcare, and 365Homecare (http://www.365homecare.com) maintained by the
365Homecare Company. Services provided by these web-based PHIMS include home
visit, health assessment, healthcare provider information, consulting service via the
Internet or phone, health and disease information, appointments with member health
care facilities, and lifetime health management.
Progress with hospital-based PHIMS
There are several different types of hospital-based PHIMS in Korea. They are: hospital
website-based PHIMS; home-based mobile PHIMS; USB memory-based PHIMS and
web and mobile storage device-based PHIMS. Most of PHIMS run by the healthcare
facilities are “tethered”, that is: linked to the hospital’s electronic medical record
system. For example, Severance hospital offers a tethered PHIMS to its patients.
Patients may view selected health information from the Severance hospital’s medical
record system as well as enter their own information such as family history.
Hospital website-based PHIMS provide individuals with customized content based on
patient interest and preference. They allow the person to perform self assessment, make
and view an appointment, view lab results and prescription, issue a certificate, and pay
medical bills. Seoul National University Hospital has a website-based PHIMS.
Home-based mobile PHIMS collect health related information and measure bioinformation such as blood pressure, pulse, blood glucose level at home, provide remote
health care services on exercise, diet and medication, and manage chronic conditions
through mobile phone services. Health manager who are monitoring client health status
24 hours a day can dispatch home care nurse to the client or refer the client to doctor’s
office when necessary. When the client visits doctor’s office or hospital, doctor can
utilize accumulated health related information collected and managed by the mobile
PHIMS. Bundang Seoul National University Hospital has home-based mobile PHIMS.
Kyung Buk National Hospital has developed a prototype PHIMS that has been
implemented on a flash memory (USB drive) that is found to be compact, light weight,
cost effective and sufficient enough to handle a large amount of clinical data. Care
documents stored on a USB follow the Continuity of Care Document standard
recommended by the international standards organization HL7 and provide a complete
163
and accurate summary of an individual health and medical history (Tran, Kim, & Cho,
2008). Care documents stored in USB can also support alerts, reminders, selfmanagement, and stakeholder communication in a standardized manner. The proposed
PHR system consists of modules that help collect distributed patient information from
multiple sources to generate individual care documents as a personal health record. The
preliminary experiment has demonstrated an acceptable performance. That is, the PHR
was found to integrate and share various clinical data such as medications, procedures,
patient demographics from admission system, test results from laboratory information
systems, images from picture archiving systems (PACS), bio-signals from patient
monitors. In particular, the system was tested by connecting it to a standardized
monitoring device to collect ECG data. The PHR system was able to receive 3,410 HL7
messages for in an hour and then generate the CCD document.
Web and mobile storage device-based PHIMS can access servers of the health care
facility and query information such as patient record, physical examination results, and
medication prescriptions. Information viewed can be downloaded in USB and users can
view it later using a mobile storage device-based PHR plug & play viewer when
necessary. For example, clients can view information when they end up visiting a
hospital during an overseas business trip or in an emergency situation. Health related
information can be added via website.
Severance Hospital is currently developing a lifelong PHR, including medical records
generated at hospitals and bio-information measured from various sensors while at
home including measures of blood pressure, blood sugar, heartbeat, temperature, SPO2,
ECG and body fat (Jeong, Kim & Bae, 2008). This system presupposes an information
exchange network between hospitals’ servers and home sensors. For safe information
exchange, users can query patient records from more than one hospital when they want.
For this purpose, web servers were designed to only retain each hospital’s index, log
and membership information. Users can also selectively save the queried information
to their computer or mobile storage device. This system connects hospitals and home
and mobile healthcare while minimizing the dangers of information leakage by not
accumulating data. It supports sustained health management by loading a plug and play
PHR viewer to a convenient mobile storage device. Development of a PHR system
using USIM- and CDMA- based mobile phones is being planned by adjusting and
supplementing current systems with feedback from demonstrative operations.
Consumer and provider views
To explore key issues related to PHIMS in Korea, a telephone survey to 715 consumers
was conducted using a structured questionnaire (Kim, Kwak, Kim, Kwon & Kim,
2008). Almost 60 percent of healthcare consumers replied that they are willing to use
PHR. In a related survey, around 84 percent of the health care providers indicated that
they are willing to use PHRs for their services. Consumers replied that they would like
to see patient problem list, history of medication, allergy information, history of
operation and clinical laboratory. Perceived benefits and concerns, types of health
information to be included, management types and security of information, and attitude
toward PHIMS were surveyed.
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Perceived benefits include more accurate diagnosis and treatment by healthcare
providers, reduction in redundant tests and prescription, and acquiring more accurate
information by consumers. Major concerns include leakage of consumer information,
unwillingness of hospitals to provide the medical record or to use medical records from
other hospitals, and initial cost for system development. Types of information
consumers would like to have in the PHIMS regarding personal health management
included information related to medical diagnosis and health promotion and prevention.
Regarding information related to health and disease, they would like to have
information on specific symptoms or disease and results of clinical laboratory tests.
Information related to hospitals included quality indicators such as antibiotics use,
information on facilities, location, available medical services and health care
professionals. Survey participants ranked an integrated third party website as the best
means to provide information on hospitals. They ranked the National Health Insurance
Corporation as the most desirable management agency for consumer information. They
ranked reinforcing liability of management agency, introducing state of the art security
equipment, and reinforcing authentication of user’s agreement processes as ways to
protect consumer information for PHIMS. They classified level of authorization into
three groups: high, middle, and low. Resident registration number and name belong to
the highest level; sex, age, and place of residence belong to the middle level; and other
information belongs to the lowest level. They ranked pin number with magnetic card
and seal or signature, pin number and certificate as a desirable method for personal
authentication.
In this context, the key issues for Korean nurses related to the design and use of
PHIMS include:
difficulty of development and operation
time required for information entry
initial cost for system development
information sharing between stakeholders
how to persuade consumers and health care providers of the benefits of
PHIMS
safety and security of consumer information, and
how to implement standards for document, data storage and communication.
References
Jeong, H-J., Kim, N., & Bae, H. (2008). Development of seamless personal lifelong health record
management system with a portal storage. Proceeding of International Conference on uHealthcare, pp98-100.
Kim, J-H., Kwak, M., Kim, E-J., Kwon, C. I., & Kim, Y. (2008). A survey of health consumers' attitude of
personnel health management service using PHR. Journal of Korean Society of Medical Informatics, 14(4),
329-343.
Tran, T., Kim, H. S., & Cho, H. (2008) Development of prototype personal health record system based on
continuity of care document. Journal of Korean Society of Medical Informatics, 14(3), 245-256.
165
New Zealand
Robyn CARR
Introduction
With a population of over four million, New Zealand has traditionally embraced
technology and is often at the forefront in the use of electronic systems. The use of
technology has extended into the primary, secondary, and tertiary sectors of health. In
line with many countries, New Zealand is aware that to improve the efficiency, safety
and quality of care, information exchange between health service providers and patients
must be improved. The personal health record (PHR) is viewed as an electronic,
universally available, lifelong resource of health information maintained and owned by
an individual. It is different from an electronic health record (EHR) system maintained
by a healthcare provider organization. The PHR is maintained by each indivudal, who
owns and manages the information in the PHR, which comes from both multiple
healthcare providers and the individual themselves.
New Zealand Health Sector
New Zealand’s health and disability services are delivered by a complex network of
people and organizations (see www.moh.govt.nz/healthsystem for more information).
Over three quarters of all health care is publicly funded. Within the public sector, the
health care purchaser and provider functions are combined and delivered by twenty-one
district health boards (DHBs). DHBs plan, purchase, manage and provide services for
the population of their district including primary, secondary and community care. Some
DHBs also provide tertiary and quaternary services. This model has highlighted the
need for information exchange and for a change to a sector-wide approach to the
development and implementation of information systems. New Zealand does not
currently have a Personal Health Information Management System (PHIMS). But there
is a strong movement towards consumer involvement as shown by this year’s national
Health Informatics New Zealand (HINZ) Conference themed Person-centred
healthcare: eHealth as enabler.
There are also many consumer groups involved, including the recently establishment of
a consumer forum by Health Information Strategy Advisory Committee (HISAC www.hisac.govt.nz). New Zealand’s early recognition and implementation of a unique
health identifier for patients, in the form of a National Health Index (NHI) number, was
established in 1993 and has enabled health providers to manage health care safely from
the width and breadth of the country. The NHI number is the link to the patient from
birth to death for healthcare, each new born is allocated a NHI number which is linked
to the EHR.
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The New Zealand EHR now aims for a distributed model where information residing in
many individual repositories, local, regional and national, can be linked to provide the
appropriate information to support healthcare and achieve better health outcomes. The
Health Information Strategy (HIS) New Zealand (Ministry of Health, 2000) focuses on
communication and connectivity to share the distributed information. Focusing on
practical solutions and achieving results in the 12 action zones listed in the HIS aims to
deliver value for all stakeholders and move New Zealand closer to a distributed EHR.
Over the next 10 years, healthcare organizations, large and small, will complete their
transition to the use of comprehensive health information systems that include EHR
and PHR systems. During this time period, provider organizations will acquire and
deploy EHR systems to better meet the clinical information needs of the healthcare
providers in caring for their patients. At the same time many ordinary people, in
addition to those with chronic and acute conditions that warrant close monitoring and
support, will adopt the use of PHR systems.
Stakeholders
There are a number of parties participating in initiatives in New Zealand: the IT Health
Cluster, which consists of health IT vendors and health informatics organizations such
as Health Informatics New Zealand (HINZ) and Health Information Association of
New Zealand (HIANZ); standards development group under Health Information
Strategy Action Committee (HISAC); a range of professional organizations; and
individual health care providers. The New Zealand government is taking a more active
role in setting strategies for health information and is funding some initiatives that will
support these initiatives. The approach focuses more on infrastructure and standards,
leaving system implementations and change management to local or regional levels.
HINZ, through its regular seminar programme in 2008-2009, has provided a forum for
the many stakeholders to explore and debate EHRs in the New Zealand context.
One of the major stakeholders in PHRs and EHRs is the patient or consumer. There are
few published New Zealand studies on this, one by Ryan and Boustead (2004)
concluded that “there is a low level of awareness and many misconceptions amongst
members of the lay public about e–health information and patient rights”. The same
finding is reported five years later by Hunter, Whiddett, Norris, McDonald and Waldon
(2009). National awareness campaigns are already underway to address this problem.
As more clinical information is stored in wider health systems, rather than an
individual patient record, debate continues on access to the information and who is to
authorize access. Many stakeholders believe that the consumer should be the one to
determine access and trials have been undertaken looking at “patient audit” regarding
access to their records.
Initiatives with PHRs and EHRs in New Zealand
The EHR is still seen as the “Holy Grail,” but by using the philosophy of “not letting
the perfect get in the way of the good,” New Zealand has decided that having some
167
components of an EHR is better than waiting for the ultimate solution, which may be
financially out of reach.
New Zealand is fortunate to have a number of health IT vendors; health care is the
largest software export category for New Zealand. Some of the health IT vendors have
worked with the health sector to provide an integrated view of information. Patient
information is often held in a number of disparate systems, including patient
management systems (PMS) for registration; admission, discharge, and transfer (ADT);
and outpatient scheduling, laboratory systems, radiology systems and clinical systems.
For health professionals there is a need to see a patient-centric view of this information.
A Ministry of Health project is looking at Safe Sharing of Information and is in the
early stages of drafting an engagement booklet, which they plan to circulate within the
health sector and eventually the wider population. This booklet mostly outlines the
current state of information sharing/use in New Zealand.
In the secondary sector companies such as Orion Systems International and IBA have
products that allow a web-based view of information from different systems, providing
seamless access to patient-related information. Orion’s Concerto product is a “Medical
Applications Portal that is placed over multiple information systems to provide a
single, seamless view of a patient’s information” such as ADT, laboratory, radiology,
clinical documents etc. The Soprano product provides “solutions for clinical notes,
discharge summaries and disease management. IBA’s Clinician View™ and
HealthViews™ and the new Lorenzo product create a comprehensive view of patient
information.
Creation of template-based clinical documents such as discharge summaries, referral
letters and clinical letters are used by a number of secondary providers. These
documents are often pre-populated with selected information from other systems, e.g.,
visit details, diagnosis, laboratory, and radiology results. On completion they can then
be forwarded to other providers e.g. general practitioners, using secure networks
offered by HealthLink and Telecom New Zealand. There are also initiatives underway
in the areas of e-referrals, order entry and e-prescribing. Information from these clinical
transactions will then form part of the EHR of the future.
Community-based caregivers are also using computerized systems that integrate patient
administration and clinical data to provide an EHR. Because nurses deliver much of the
community care they have significant input into information held in the EHR. The
requirement for standardized terminology is urgent.
Nursing Initiatives
Chronic conditions pose increasing problems for quality of life with the burden of
symptoms from these conditions internationally accounting for approximately 70
percent of all health expenditure. In New Zealand, the National Health Committee
(2005) identified that chronic health conditions accounted for nearly 80 percent of all
deaths, and 70-78 percent of healthcare expenditure. Consumers with chronic
conditions mostly live their lives in their own communities and gain support from
professionals and peers, therefore an increased focus on effective self management
support is needed as this will aid consumers’ independence and confidence.
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Effective self-management is underpinned by consumers having access to information
that is appropriate and relevant for their situation. Reports from New Zealand indicate
consumers want better explanations about their conditions. Health information can be
provided in a variety of ways but little is known about how consumers prefer to receive
such information. Nurses and midwives are traditionally patient-focused so see the
benefits of developing multidisciplinary EHRs which are accessible from a range of
places. Nurses and midwives are being utilized in the development of EHRs and
through this are developing health informatics expertise. The initiatives in the EHR
field involving nurses and midwives are the maternity sector, mental health sector,
primary and community sectors. There is still a big gap in electronic systems designed
to address the specific nursing requirements to aid assessment, planning,
implementation, and evaluation of care.
Primary Care
The primary sector has had a high uptake of the use of electronic medical systems,
initially stimulated in the 1990’s by the government requirement that all patients
registers and claims for service provision be submitted electronically and contain NHI
number. The NHI number is now used on almost all health records except some sexual
records, although private providers may also retain their own local number for their
own use.
The use of information systems and technology has now reached 100 percent in the
primary sector and 75 percent use of full clinical functionality including clinical note
taking during patient encounters, generation of prescriptions, laboratory and radiology
request forms and well as electronic receiving of results. Nurses working as
practitioners in these areas are also contributing to the patient record. There is now a
high use of clinical messaging exchange in General Practices. New Zealand general
practice has one of the highest electronic medical record adoption rates in the world.
The use of HL7 as the standard for messaging exchange has been of great benefit as it
is internationally recognized.
Mental Health
Mental Health is an area where progress in the use of an Electronic Health Record has
also been made. The Auckland District Health Board has been utilizing a product called
Health Care Community (HCC) from Intrahealth for a number of years. The original
implementation in the community has now been extended into the secondary sector.
This allows access to a single electronic health record across both community and
secondary sectors. The three district health boards in the Auckland Region sponsored
the Auckland Regional Mental Health Information Technology project to extend the
use of the one instance of HCC to the three district health boards. This allows access to
one regional mental health record for a client. Through the interfacing of systems, each
of the DHBs can utilize the one record that is interfaced to their own patient
management system.
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Conclusion
New Zealand is beginning to capitalize on EHR and PHR initiatives. While effective
use of information technology is likely to play a significant role in the country’s future
success, the focus on building collaborative partnerships between government,
clinicians, and patients is seen as the ultimate key to ensuring that the EHR and PHR
becomes an integral part of improving patient care. New Zealand is working on sorting
our the privacy issues and moving towards the concept of “safe sharing” of health
information. We are not content to wait and see what happens but want to build this
into its systems from the design stage.
References
Hunter, I., Whiddett, R. J., Norris, T., McDonald, B. & Waldon, J. (2009). New Zealanders’ attitudes towards
access to their Electronic Health Records – preliminary results from a national study using vignettes. Health
Informatics Journal, (in press).
Ministry of Health. (2000) The New Zealand Health Care Strategy.
http://www.moh.govt.nz/moh.nsf/pagesmh/2285/$File/newzealandhealthstrategy.pdf.
Retreived
from
Ryan, K.M. & Boustead, A.J. (2004) Universal electronic health records: a qualitative study of lay
perspectives. New Zealand Family Physician, 31,149–154.
170
Norway
Ragnhild HELLESØ and Anne MOEN
Faculty of Medicine, Institute of Health Sciences, University of Oslo, Norway
Norwegian Health Care System
Norway is a well-developed welfare state with a publicly financed and operated health
care system. There are two levels of care: community health and specialist services,
with different aims, roles and responsibilities, reimbursement structures and legislation.
Community health is provided by municipalities and encompasses general
practitioners, services for elderly and disabled, for example, home care, nursing homes,
public health, occupational health and maternity care. Specialist services are managed
by the Ministry of Health through four regional health enterprises, and encompass
hospitals, rehabilitation centres and intermediate care centres of all sorts. Patients’
access to care and treatment at the two levels depend on severity judgments.
All Norwegians have a unique personal identifier. The Personal Health Act passed in
2001 state patients’ ownership and access to their health record(s). Patients are entitled
to information and knowledge about their health conditions, available treatment
choices, and potential risks and side effects, adapted to their capacities to ensure that
content and significance of the information is understood (Sosial- og
helsedepartementet, 2000). Since the first information and communication (ICT)
strategy for health care in 1996, ICT infrastructures, interoperability, connectivity,
security, electronic patient records (EPRs), standards, electronic messages, and access
to professional support and knowledge are emphasised. In the recent strategies,
Te@mwork 2007 and Teamwork2.0, services for participation and access to health
information for patients, family members and the public at large is clearly accentuated
(Helsedepartementet & Sosialdepartementet, 2006).
State of PHIMS Deployment
Persons engage in complex regimens of long-term care or acute illness in the context of
their normal lives at work and at home. Being assigned or assuming new roles,
deciding which information to attend to, knowing which prevention recommendations
to follow, choosing among available self-assessments, or deciding health observations
to perform and report are examples of responsibilities and challenges (Moen &
Brennan, 2005). Support for personal health information management extends the
widespread deployment of electronic patient records. There is close to 100% adoption
of EPRs among GPs, and in hospitals digitalized information is mixed with paper
forms scanned into the EPR system at patient’s discharge. Personal health information
management systems (PHIMS) initiatives are mostly in an experimental and/or
demonstration stage.
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We will provide some examples of PIMHS initiatives in Norway, illustrating different
roles of patients as follows: digitalised, digitally monitored and/or self-reporting,
digitally participating or digitally producing patient (extended from Tjora, 2004).
Digitalised patient
The digitalised patient utilises access to information about their personal health,
primarily accumulated by health providers in the EPR. The law grants patients access
to his or her “patient record”, to obtain a copy, and upon request brief, simple
explanations of medical terms, etc. Several hospitals in a regional health enterprise join
efforts to develop a patient portal (www.minjournal.no[2]) with a security
infrastructure following requirements of the Norwegian Data Inspectorate. Through the
portal patients can access parts of their EPR, report observations, accumulate their
discharge letter(s), communicate with their providers and manage appointments with
their provider.
Discharge summaries are exchanged across the two levels of care, and the document
can also be handed to the patient at discharge. Although the EPR is considered an
essential tool for information exchange between health care providers at different
levels, gaps in this information exchange chain can lead patients themselves to handle
such health information at home (Hellesø, Sorensen, & Slaughter, 2009). A consentbased patient summary is suggested as a tool to combat fragmentation and secure
interoperability and security when sharing clinical information across levels of care, or
in unexpected, emergency situations. It is planned that patients themselves also can
record and store personal notes in this tool (Grimsmo, Remen, & Nystadnes, 2009).
Persons who need coordinated and inter-disciplinary care have a legal right to an
individual plan (IP). A well developed IP can be a valuable resource for the digital
patient (Sosial- og helsedepartementet, 2001), and the patient’s active involvement,
participation in and use of the IP is paramount for success (Vatne, 2008). Currently a
web-based IP is being piloted to explore development of and use by consumers and
providers alike (Bjerkan, 2009).
Digitally monitored and/or self-reporting patient
Strategies for self-monitoring and information storage can include caregivers’ to-do
lists, diabetic patients’ diary of diet and blood glucose measures, or self-monitoring at
home of continuous ambulatory peritoneal dialysis. Digitally monitored and/or selfreporting patients utilize special purpose devices, sensors, or telemedicine services for
surveillance and reporting specific health concerns and symptoms. To ease transition
from hospital to home or allow patients to stay at home, models of “hospital at home”
are set up with monitoring technology and sensors to send information to the hospital
unit. To complement monitoring, nurses and physicians visit the patient to provide
specialist health care in their homes. This is offered to chronically ill children in
transition from a pediatric ward (Ullevål Universitetssykehus, 2009 ), and for COPD
adult patients (Bretthauer, 2004). Other examples of monitoring include “Easy Health
Diary” where blood glucose, diet and activities are reported from sensors (e.g.,
pedometer) via mobile phones from persons with obesity and type 2 diabetes to a
repository (Årsand, Olsen, Varmedal, Mortensen, & Hartvigsen, 2008).
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Eczema counseling using secure e-mail communication with digital pictures and parent
descriptions of rash exemplifies services where parent caregivers for children with
atopic eczema are reporting and are empowered to control the situation (Nyheim,
Danielsen, Løvold, & Bergmo, 2001). Such technology-enabled data collection and
reporting feeds into awareness and self-management by the patient, and enables more
specific advice by the health providers.
Digitally participating patient
The digitally participating patient and their family members access and evaluate
appropriateness, reliability and validity of health information they acquire from a
variety of sources. This is a shift towards a reflective or conscious consumer of health
care utilising information in processes of personal decisions relevant to their own
health and well-being. The number of Norwegians who use the Internet as a source for
health information increased from 31 percent in 2001 to 58 percent in 2007
(Andreassen, Wangberg, Wynn, Sørensen, & Hjortdal, 2006). The digitally
participating patient and family members benefit from services offered by individual
entrepreneurs, for example www.lommelegen.no with diagnostic information and
health advice, or www.barnimagen.com offering information about issues during
pregnancy, maternity care and care for newborn children.
Technology-mediated information and communication interventions support the
digitally participating patient in their illness trajectories and in incorporating strategies
for symptom management and self care. For example, cancer patients using WebChoice
(Ruland & Andersen, 2004), or children using SiSom (Ruland, Slaughter, Starren,
Vatne, & Moe, 2006), can report symptoms, access relevant best evidence, and quality
information to handle significant symptoms, and communicate with their providers.
The REPARERE prototype provides heart surgery convalescents and their families
access to system tailored ‘just-in-time’ presentation; that is, filtering information
according to “this is most likely relevant for you now”, and ‘just-in-case’ presentation,
information that “is important about CABG-recovery” (Moen & Smørdal, 2006).
Providing information according to common experiences, changing focus, and multiple
perspectives (for example that of patient, family members, health care providers), gives
the digitally participating patient a broader basis for engaging in symptom
management, self-care and coping.
Digitally producing patients
The digitally producing patient and their family members use distributed solutions for
virtual peer-work; collaboration, accumulation and systematization of knowledge and
everyday experiences to produce health information for “living well”. Digitally
producing patients explore synchronous and asynchronous means for ‘many to many’
interactions among peers, moving beyond traditional ‘one to one’ consultation, and
‘one to many’ interactions in patient portals. For example ACTION (Assisting Carers
using Telematics Intervention) project report experiences of increased knowledge,
social contacts and support by elderly caregivers using specially designed and set-up
broad-linked PCs as gateway to information about topics like dementia, cerebral stroke,
or nutrition, and oral discussion forums with other caregivers or health care providers
173
(Torp, Hanson, Hauge, Ulstein, & Magnusson, 2008). RareICT provides a virtual
environment for collective knowledge construction to support accumulation of
everyday experiences, knowledge creation and peer-support within the secure
environment users required. This initiative builds on social software and Web 2.0
platform in peer-activities for knowledge creation, and accumulation of self-care
experiences and coping to “living well” with a rare condition (Moen, Smørdal, & Sem,
forthcoming).
Key Nursing Issues Related to PHIMS
People in Norway are expected to take advantages of available PHIMS support, make
deliberate, informed health decisions, and be an active participant in his/her health
management. Unfamiliar or un-chosen situations coupled with limited capacity for
information processing can lead to disappointment and ill-use of valuable energy in
health and illness situations. Although 32 percent of consumers viewed Internet as a
feasible and important resource for health information, still 72 percent preferred faceto-face communication with their provider (Andreassen et al., 2006). This indicates
asymmetries operating in providers and patients/consumer relationships, and such
interactions are likely to remain with increased use of PHIMS.
The Norwegian Ministry of Health and Care Service has launched a new health care
reform this summer (2009) where the emphasis shifts from institutionalized and
provider-centered care models to community health and patient-centered care
approaches. The reform draws attention to patients’ and family members’ participation,
provides incentives for more services at the community level, and resources for selfmanagement, prevention, early detection and maintenance and learning. This calls for
PHIMS, and challenges professionals, including nurses, to realign and consider
carefully their new supporting roles and responsibilities.
Key nursing issues related to PHIMS sit along a provider-consulting-consumer
continuum. Exploiting patient-centered practice models with informed, shared
decision-making in patients’ and clinicians’ interactions expands on previous efforts in
standardization, terminologies, EPRs, connectivity, interoperability and information
exchange, information security, diagnostic technology, and resources for knowledge
management. When sorting out the issues, it is important to refrain from reconstructing
the institutionalized discourses and perspectives as health care moves out of the
traditional patterns of interaction in hospitals.
Agenda for Action
The development and deployment of PHIMS challenge nurses in Norway to
reformulate, rethink and reorganize their established working models as well as their
approach to individual patient care and public health care. Exploiting patient-centered
practice models along a provider-consulting-consumer continuum with informed,
shared decision-making in patients’ and clinicians’ interactions requires new
competencies, knowledge, skills and conceptualizations of new forms of interaction.
Readiness for the electronic healthcare needs to be articulated and taken into account
both for the clinical practice field and for the education system.
174
Conclusion
Experience in Norway illustrates how patient roles are expanding, from recipient of
care to informed, active and deliberate participants in their health care. This has
implications for PHIMS support, and knowledge development about information
integrity, roles and responsibilities, accountability and trust, confidentiality and
privacy. Increased access to and availability of health information changes expectations
to patients’ and providers’ roles and relationship. Following improved access to and
availability of informatics and PHIMS support, it is paramount to scrutinize patterns of
utilization, and exploit conditions for feasible use of PHIMS.
References
Andreassen, H. K., Wangberg, S. C., Wynn, R., Sørensen, T., & Hjortdal, P. (2006). Helserelatert bruk av
Internett i den norske befolkningen. Tidskrift for Den Norske Lægeforening, 22(126), 2950-2.
Årsand, E., Olsen, O.-A., Varmedal, R., Mortensen, W., & Hartvigsen, G. (2008). A system for monitoring
physical activity data among people with type 2 diabetes. Studies in Health Technology and Informatics, 136,
113-118.
Bjerkan, J. (2009). A web-based collaborative tool for community individual care plans in Norway. Scientific
demonstration at NI 2009, Connecting Health and Humans Conference, Helsinki, Finland.
Bretthauer, M. (2004). Hjemmesykehus for KOLS-pasienter. Tidskrift for Den norske Legeforening, 124(19).
Grimsmo, A., Remen, V. M., & Nystadnes, T. (2009). Oppsummert pasientinformasjon (kjernejournal):
Nasjonal IKT, Innovasjon Norge, Helsedirektoratet.
Hellesø, R., Sorensen, L., & Slaughter, L. (2009). Personal health notes: Lessons learned. Poster presented
at NI 2009, Connecting Health and Humans Conference, Helsinki, Finland.
Helsedepartementet, & Sosialdepartementet (2006). Te@mwork 2007 - Electronic Interaction in the Health
and Social Sector. Oslo.
Moen, A. (2007). Personal Health Information Management. In W. Jones & J. Teevan (Eds.), Personal
Information Management. Seattle, WA, USA: University of Washington Press.
Moen, A., & Brennan, P. F. (2005). Health@Home: the work of Health Information Management in the
Household (HIMH) - implications for Consumer Health Informatics (CHI) innovations. Journal of American
Medical Association, 12(6), 648-56.
Moen, A., & Smørdal, O. (2006). Informatics-based learning resources for patients and their relatives in
recovery. Studies in Health Technology and Informatics. (Vol. 122) Amsterdam: IOS Press.
Moen, A., Smørdal, O., & Sem, I. (forthcoming). Web-based resources for peer support - opportunities and
challenges Paper presented at the MiE 2009, Sarajevo.
Nyheim, B., Danielsen, I., Løvold, A., & Bergmo, T. (2001). Eksemveiledning vis e-post, Prosjektrapport.
Tromsø: National Center of Telemedicine.
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Ruland, C. M., & Andersen, R. (2004). Designing WEB-CHOICE - Individualized Support for Cancer
Patients through the Internet. Poster presented at the MEDINFO 2004, San Francisco, CA, USA.
Ruland, C. M., Slaughter, L., Starren, J., Vatne, T., & Moe, E. (2006). Children's contributions to designing a
communication tool for children with cancer. Studies in Health Technology and Informatics, 122, 80-85.
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176
Scotland
Heather STRACHAN
Scotland’s vision for eHealth is to support the overall NHS Scotland goals, those of
health improvement, reducing health inequalities, and improving the quality of
healthcare (Scottish Government, 2008a). It will do this by exploiting the power of
electronic information to help ensure that patients get the right care, involving the right
clinicians, at the right time, to deliver the right outcomes. Scotland’s eHealth Strategy
is working towards electronic patient records and electronic communication becoming
the primary means to manage healthcare information within our healthcare system.
Amongst the challenges identified in the strategy is the recognition that patients and
carers need information. A specific strategic aim for eHealth is to contribute to health
literacy and ensure that all citizens have the necessary skills, knowledge and
confidence to management their own health (Scottish Government, 2008b).
NHS Scotland eHealth Strategy
Scotland’s population of just over 5 million receives healthcare from 14 territorial
Health Boards, who provide primary and community care, and acute services. There
are a further 6 "special" Health Boards, which provide specialist services direct to the
public or to other NHS Boards. Nationally and within each Health Board there has been
investment in modern eHealth systems that have already delivered benefits to patients
and staff. Building on this investment, the eHealth strategy makes a commitment to
give NHS Scotland’s clinicians access to a clinical portal. Implementation of clinical
portal and integration technology will allow data from existing and future systems to be
shared more easily, thereby delivering a virtual electronic patient record. A clinical
portal is an ‘electronic window’ that displays a range of information that is essential for
clinicians to deliver patient care, even if the information is actually held in a number of
different places.
The aim of the portal is to:
•
•
display patient information from multiple applications and information
repositories
provide seamless access to these applications and repositories for viewing or
data entry, as appropriate.
While the focus of the clinical portal is on allowing clinicians access to information
about the patient and other clinical applications, the technology it uses could also
support a “patient portal” and enable the people of Scotland to securely access health
information, services and communication channels to help them manage their health.
The literature tends to focus on provider controlled electronic health records or patient
controlled health records rather than clinical or patient portals.
177
However in reality the capabilities may be similar and it is the model or delivery
mechanisms that are different. Indeed whether it is an electronic health record
controlled by either the provider or the person it is a somewhat misleading term as the
technology usually supports wider capabilities than simply a record of an individual’s
health and healthcare. A more appropriate term of Personal Health Information
Management System (PHIMS) is growing in acceptance.
The capabilities of the patient portal are potentially wide ranging. In the future a patient
portal could allow people access to their own health records as well as enabling them to
record their own health data such as personal preference, health assessments or signs
and symptoms. This could support better communication between the nurse and the
patient, and therefore improved patient-centred care. It could provide easy access to
trusted information sources on health and also support remote access to health services
such as ordering medication or making appointments.
There is general enthusiasm from both patient and health care organisations for a
patient portal which is seen as a potential enabler for improving health literacy in
particular for health improvement and long term conditions management. The patient
portal also has the potential to address a number of aspects of the Institute of
Medicine's quality dimensions, which the eHealth Strategy aims to support, including
patient safety, effectiveness, efficiency, equity, patient-centeredness and timely care.
Evidence is emerging that it can improve shared decision making, self care and patient
centered care by empowering patients to be more involved and active in their
healthcare, improving access to services and supporting innovative new ways of
delivering services. Recognising that for most countries using information and
communication technology in this way to support healthcare is still a relatively new,
the issues, challenges and benefits are currently being explored prior to agreeing an
approach to a “patient portal” in Scotland.
Current PHIMS in Scotland
There is a plethora of websites delivered by local Health Boards, Managed Knowledge
Networks, and Charities as well as national organisations. These provide general or
specific information about services, conditions and treatment. Some of these websites
link to patient portals which provide access to limited parts of a patient’s record. Some
portals, particularly those focusing on primary care services, have interactive
communication features that support, for example, booking of appointments, secure
email and the ability to order repeat prescriptions. Of the examples listed in the
appendix, numbers nine to 12 were demonstrator projects co-ordinated by NHS
Knowledge Services as part of Scotland’s Knowledge Management Strategy.
These demonstrators utilise national information sharing tools to create a shared pool
of national and local information. The demonstrators also focused on the role of the
knowledge worker and on working with local partner organisations such as local
councils, to support people to gain access, education and support to use these portals.
Complementing this strategy will be the development of a new nationally co-ordinated
resource called “NHS Inform” which will provide the public with access to trusted
sources of health advice. It will be developed to complement the current national
telephone helpline advice service.
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The Scottish Government is currently funding one Health Board to undertake a Patient
Portal Demonstrator Project and the learning from this project will be used to inform
the future direction for further work. The project's will focus on supporting patients
with chronic obstructive airway disease and diabetes but other client groups will not be
exclude from using the patient portal. The project aims to develop a patient
engagement model, provide a secure access model, identify benefits and share lessons
learnt in relation to functional requirements that have been identified by patients to
support them to manage their health. Early discussions with patients and NHS
professionals have identified the main functionality and features, which includes a
broad range encompassing access to information both from provider records and
trusted sources on health, diseases and their treatment options, as well as the ability to
access services and utilise electronic communication channels. The priority is for
people to be able to personalise their own portal. Functionalities and feature include:
make appointments with healthcare professionals in primary care
order repeat medication prescriptions
access to laboratory reports
view immunisation status
portal that can be personalised
provide access to trusted sources of health information
allow recording of self management goals and targets
enable monitoring of own condition
reminder about targets set and appointments due
record and monitor home measurements
information about local support groups
peer to peer communications
peer to professional communications
use of telecare devices.
Nursing Issues
A patient portal or PHIMS has the potential to have a significant impact on how nurses,
and other members of the multidisciplinary team, deliver care to patients in the future.
Many of these issues should be explored further to ensure the delivery of real benefits
for people’s health and minimise risk in areas such as confidentiality.
Nurses will need to develop new skills and adopt new working processes to
support changes in relationships with patients as PHIMS enables more active
involvement of patients in their healthcare.
Information governance policies need to consider the implications of the
PHIMS on authentication, identity and access management, information
sharing, data quality, audit and retention to ensure that nurses fulfil their
professional accountability for maintaining confidentiality and security of
personal information.
Public engagement, equality impact assessment and privacy impact
assessment can help to support the design of PHIMS to benefit patients and
reduce risks and undesirable or unintended consequences that could result
from introducing PHIMS.
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Patients should be able to choose whether they use PHIMS as part of their
healthcare journey and may benefit from education, support and access to
information technology, together with support to take action based on relevant
information to improve their health.
The implications of introducing PHIMS on communication flows and
workload should be examined and any changes appropriately managed.
Nurses should examine how they present information in the patient’s record to
ensure it uses language that is understandable for patients. Patients will also
require tools, processes and support to enable them to record their preferences
in their health record.
Scotland’s eHealth Strategy is patient-focused, clinically led and benefits-driven and its
vision to exploiting the power of electronic information is as relevant for patients as it
is for nurses. Sharing the virtual patient record as a component of a patient portal has
the potential to promote more involved, active patients and more proactive, prepared
healthcare teams. This will contribute to the delivery of high quality patient care for
the people of Scotland.
References
Scottish Government. (2008a). Better Health Better Care. An Action Plan. Retrieved
from http://www.scotland.gov.uk/Publications/2008/01/29152311/0
Scottish Government. (2008b). eHealth Strategy 2008-2011. Retrieved from
http://www.scotland.gov.uk/Publications/2008/08/27103130/0
Further information
1. Primary Care – A Patient Online System. Patients in a GP practice can book
appointments, access their own lab results, immunisation status and request repeat
prescriptions http://www.townheadsurgery.com/online.htm
2. Children’ s Services - Information for parents with a baby in the paediatric
intensive care unit in Edinburgh Royal Infirmary, access to the child’s record with
hyperlink to a glossary of terms, a static view of the child’s image on daily basis and
diaries
written
with
baby
as
first
person
to
help
bonding.
www.babylink.info/edinburgh/babyLink/intro_page.aspx
3. mihealth – A personal online healthcare organiser designed to provide patients with
information support and tools to help them manage their practical needs. This has been
implemented in oncology in Spire Murrayfield Hospital, Edinburgh and Royal
Alexander Hospital in Paisley. www.mihealth.info
4. Scottish Care Information Diabetes Collaborative (SCI DC) - patient portal for
people with diabetes http://www.dmag.org.uk/bird/
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5. Diabetes information - My diabetes, my way, provides information about diabetes
and how it affects people. It links with Scotland’s eLibrary information resource
http://www.mydiabetesmyway.scot.nhs.uk/
6. Renal Patient View –Patient with kidney disease are able to access their record as
seen by the clinician. In addition it gives access to information on kidney disease,
treatment services. http://www.renalpatientview.org/
7. NHS 24 provides health information and self care advice. www.nhs24.com/content/
8. Clinical Decisions - The NHS Scotland’s eLibary provides a portal to support
clinical decisions by both clinician and patients. http://clinicaldecisions.scot.nhs.uk
9. Cancer Managed Knowledge Network Demonstrator, collaboration between
NES, Macmillan Cancer support, NHS Highland and Highland Council public libraries
to create a cancer information online portal with patient and professional entry points
and seamless links between the two. The portal brings together information from local
and NHS, voluntary sector organisations and local authority sources. Information
literacy
training
and
support
points
complement
this
project
www.cancerinfoplus.scot.nhs.uk (people) www.cancermkn.scot.nhs.uk (professionals)
10. Borders Health in Hand Virtual Patient Navigator, a partnership between NES,
NHS Borders, Borders Council and local employers created a website for patients and
carers, a network of facilitated access and support points in public libraries and
employers premises and information literacy training of both patients and
professionals. www.bordershealthinhand.scot.nhs.uk. The site provides support for
long term conditions, lifestyle management and access to services.
11. Developing a Knowledge Working Role to improve access to health
information in the Gorbals in Glasgow. The Gorbals health living network
demonstrator showed how locally based knowledge workers can help people in
disadvantaged areas take more control of their health and wellbeing. Community
development staff in this project used health information literacy skills to share
information with members of the public to help build peoples confidence in finding and
using health information. www.healthinfoplus.scot.nhs.uk
12. The Health Information Online demonstrator show how the information
sharing technology provided by NES creates a shared pool of national and local, patient
and professional information. This can be used to widen access to resources and
present information in tailored ways to meet the needs of different audiences. Partners
in this demonstrator are NES, Scotland’s Health on the Web, Health Protection
Scotland, NHS Western Isles and the Telephone Help Lines Association.
www.healthinformationonline.scot.nhs.uk
13. NHS Scotland’s eLibrary provides information for patients in a range of areas
including Cancer, Diabetes, Stroke, health information, and self management and
rehabilitation. http://www.elib.scot.nhs.uk/portal/elib/pages/index.aspx
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Slovenia
Helena BLAŽUN
Good health information systems are the key point to increasing the effectiveness of the
health care system. The most significant element for management of the health system
and for proper decisions at all levels and in all fields of health care is information. It
would be very interesting to compare health systems between different countries
because it is possible that the situation related to health information is similar in many
other countries. In Slovenia, we are not satisfied with the health information that is
currently available, but we also have to be aware of the huge burden for health workers
who are expected to collect personal health data to the different central places, without
any feedback of information (Eržen, 2004). At present, we have a difficult situation in
relation to health information systems: we have legislation that allows health workers
to collect different data, but we still do not have defined methods for collecting
adequate health data.
Historical context
The situation was not always like this. In 1991, Slovenia was one of the very advanced
countries in terms of information and communication technology and health
informatics. The Health Insurance Institute of Slovenia had purchased 3,000 IBM
computers which meant that 90 percent of all health institutions were equipped with
personal computers. This was the starting point for implementing health information
system in the hospitals, primary health care centres etc. in Slovenia (Iljaž, 2005). From
then, experts started to build health information systems, but these systems enabled the
collection of data instead of formation of electronic records. Data that were collected
and reported are generally not the data that are needed for the realization of personal
health goals. In addition, these data and systems do not adequately support
management because of their incompleteness, incorrectness and inability to be adapted
to the current needs. In Slovenia, we now have a lot of different health information
systems, therefore we need standards to enable the proper transfer of data between
different health institutions. Currently, in spite great efforts, we still are not able to
ensure such standards.
One of the pioneers in development of health information systems in Slovenia was M.
Premik who in 1960 created a “minimal data set” tool for health records. This is one
example of how advanced Slovenia was in ICT and health information systems; it was
the second country in the world to develop and implement electronic health record.
This was called the “wise health card” and was the beginning of personal health record.
Despite those very successful first steps, electronic personal records have not advanced
far: the current health card does not include medical data, just the basic data about the
health insurance of the person. During the last few years we have added some health
data, but progress is restricted because the memory of the health card is only 8K.
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Progress towards personal health records
A new identity personal card is being prepared that will also be the health card and will
enable access to electronic health record (EHR). The construction of the architecture
for electronic health records is not yet on the agenda at the Ministry of Health
Republic. In addition, the project of the World Bank for standardization of
management of health systems, including electronic health records, was not successful.
The content of electronic health records for Slovenia is not yet defined, but according
to the statements of some health insurance companies, these records are already in
preparation and will be implemented in the next two years. One hospital is testing the
proposed HER in a pilot project.
Nursing implications
The problem of current information systems is not only the lack of the standardization
but also the narrow focus of development programmes; these are medically oriented
and do not include the work of other health professionals such as nurses. In connection
with those themes, there is concern about nursing and medical education in the field of
information and communication technologies. In Slovenia, medical and nursing staff
do not accept changes readily, which means that we will need a lot of time for the
acceptance of new technologies and needs. Regarding this issue, in 2002, as part of the
EU’s NICE project, we developed a post graduate specialist study programme for
informatics in nursing care which we provided up until the study year 2007/2008 when
we commenced Bologna masters degree programmes.
It is very important to build sufficient levels of ICT knowledge into all curricula of
Bologna levels and not only into the post graduate programmes. The Faculty of Health
Sciences at the University of Maribor educates professionals in nursing care,
bioinformatics and management in health care and therefore responds in an adequate
way to society needs and changes. We have developed the undergraduate nursing
programme with the supporting subjects to the nursing field, including ICT, e-learning,
simulations etc. but the programme was not supported by relevant official body in spite
the fact that the potential employers of our graduates supported the programme and the
ICT components. If we are able to teach students about the technologies they will be
using in health institutions, then their adaptation time when starting to work would be
shorter.
References
Eržen, I. (2004) Health information system in Slovenia at crossing – needs and practice. Informatica Medica
Slovenica. 9, 1-2.
Iljaž, R. (2005) Electronic Health Record and online health services in primary health care. Informatica
Medica Slovenia, 10 (1).
183
South Africa
Graham WRIGHTa and E. M. ELLISb
a
Faculty of Health Sciences, Walter Sisulu University, Eastern Cape, South Africa.
b
Dept of Hospitality, School of Tourism and Hospitality, Walter Sisulu University,
Eastern Cape, South Africa
Background
South Africa has a population of just over 48 million in a country of 1, 219,090 km2 .
The country is divided into nine provinces, with a great diversity in size, flora, fauna,
industry, natural resources, population and economic wealth. It is the overall
responsibility of the national Department of Health to provide “access to health care for
all …, and to focus on working in partnership with other stakeholders to improve the
quality of care of all levels of the health system, especially preventive and promotive
health, and to improve the overall efficiency of the health care delivery system”.
However, this provision is co-ordinated through the Provincial Departments of Health.
The funding for these structures is provided by the national fiscus.
Additionally, a vibrant and effective private sector also provides healthcare. There is an
effective controlling system of Councils registering and authorising various health-care
providers in addition to an effective Medicines Control Council charged with
determining the “safety, quality and effectiveness of medicines”. Currently, there is
much lively debate regarding the provision of a National Health Insurance system that
is intended to provide universal access to all medical facilities throughout the country.
See Bibliography and links end for links to further information about the health care
system.
South Africa faces a number of significant challenges to the health care system.
Perhaps the most commonly acknowledged challenge is the incidence of TB and XDRTB amongst the population. Another challenge is the incidence of HIV/AIDS.
According to the SA National HIV Survey in 2008, “among those between 15 and 49
years old, the estimated HIV prevalence was 16.9 percent in 2008”. A further
significant challenge to the health sector in South Africa is the persistence of malaria.
Although the percentages of people at risk of contracting malaria varies from province
to province, the national risk percentage stands at 10 percent.
State of Deployment of personal health information management systems
In the 2005/2006 financial year, the South African government made available funding
for the National Health Information Systems Project (www.hst.org.za/generic/91).
This project was approved in cabinet and was driven by the National Treasury and
Chief Directors in the National Department of Health (NDoH).
184
Its budget increased from R5.7million in phase 1 (05/06) to R11 million in the 06/07
financial year (Phase II) whilst support days increased from 300 for the NDoH and 800
for provinces in Phase I to full-time support for both. The intention of the project was
that health information data was to become available at optimal levels. There were to
be improvements in both the quality of data available and the quantity of data.
Shortcomings were to be identified and remedial steps taken. In 2005/2006, a project
dealing with data from the Emergency Health Medical Information System was also set
up. Again, the two major aims were to improve the quality and quantity of data
available.
Both of these projects were successful to some extent, with the aims of the project
initiators being met, in that:
3,928 provincial health staff were trained on the district health information
system
support for the implementation of the National Indicator Data Set (NIDS) in
all provinces was achieved
a health information systems audit was conducted in all provinces to
determine the status of HIS staffing, equipment and infrastructure
support was provided to strengthen the Provincial Quarterly Reporting System
(PQRS) in terms of integration into the DHIS, improvement of data flow to
meet National Treasury reporting requirements and improvement of data
quality
the District Quarterly Reporting System (DQRS) was developed and aligned
with the PQRS
inputs were provided for the development of the MESH tool and quantitative
scoring of districts
inputs were provided, from a health information management perspective, for
standardized facility definitions and classification which has been approved by
the Technical Committee for implementation nationally, and
emergency Medical Services (EMS) and Environmental Health Service (EMS)
information systems were developed, utilizing the DHIS. Training was
conducted in all provinces and seven provinces (of nine nationally) started
submitting EMS data to NDOH. (http://www.hst.org.za/generic/91)
However, despite the strides made as detailed above, in 2009 in South Africa, there is
debate about the probability of the data collected becoming available in the public
arena, and the constitutionality thereof. It is appears unknown to the majority of people
that there already exists a large body of personal data available to public scrutiny. In
terms of existing legislation, many of the dealings that individuals have with
governmental agencies form a part of the public record. This is not generally realised.
The thoughts of what has hitherto been regarded as “private and personal” forming part
of a national database are leading to societal unease.
This unease, however unfounded, is magnified by the existing stigmatisation around
HIV infection status. “In order to alleviate this unease, the Protection of Personal
Information Bill … tabled in Parliament together with other recent developments in
(South African) law such as the National Credit Act recognises and aims to strike a
185
balance between the right to privacy of the individual and the free flow of information
in an open and democratic society” (Chetty, n.d.). It remains to be seen whether or not
the mass of the public will be reassured by this measure and so will be amenable to
having their personal particulars, their medical records, collected by public servants
and, perhaps, losing a degree of confidentiality that they have regarded as a given.
This view is further compounded by the links of all Government departments through
the forthcoming Home Affairs National Identification System (HANIS) using
smartcard technology. According to one Australian commentator, ‘South Africa is
intending to introduce a multi-purpose national ID smart card system, part of its
HANIS system, which is plainly a Big Brother mass surveillance and information
sharing system’. Nevertheless, it is a given that HANIS will be initiated in the near
future. What is unclear is the amount of personal information that will be stored on the
HANIS cards – and who may properly access that information?
Key Nursing Issues related to the Design and Use of PHIMs
South Africa will face many challenges with regard to designing and implanting PHIM
systems. Much of the primary healthcare infrastructure is rural. There are many
challenges to the provision of technology in the rural areas. In this respect, it is
unfortunate that many of the primary care centres are without a reliable source of
electrical power. Many of the Primary Health carers were educated some while prior to
the general adoption of technology. There may be a level of apprehension regarding its
use that could be regarded as technophobia.
Where technology is used to manage health information, there are expected to be
challenges to the physical security of the equipment. Given that there are many of
South Africa’s primary health care patients who live in rural areas, and who may be
considered to be educationally-disadvantaged, there will be a degree of apprehension to
be overcome. Nursing staff should be well-placed to overcome this apprehension and
should be able to provide advice and support to the end-user consumer, in this case, the
patients. One primary role of the nursing staff will be to reassure their patients of the
security and confidentiality of their information. Nurses, as the primary care provider,
must be educated themselves as to the kind and amount of data to be collected from the
patient. They will also have to be taught to use appropriate technology. Another
challenge to be overcome will be the pressing need to allow non-medical staff access to
the technology used.
Agenda for Action
The first item must surely be to have the nursing staff give informed input into
the need and development of Health Information Systems. If these systems are
to take their pivotal role in delivering safer, faster, more appropriate health
services, the nursing staff must see themselves as providers of raw
intelligence, rather than as mere care-givers.
186
The staff of the health resources need to be involved in the development of
appropriate technology and systems. As the end-users of such systems, who
better describe what the systems must achieve?
The staff that are likely to be using technology to collect data for the proposed
Health Information Systems must be trained to use such technology. In some
cases, this will mean formal training courses, in other cases, on-the-job
training must be offered.
Infrastructure needs will have to be addressed. Where such facilities are
already planned, their provision must be accelerated.
Conclusions
Nursing and Primary health care in South Africa needs to be very actively involved in
the development and initiation of health informatics. If the primary aims of the
governmental expenditure are to be achieved, the health care staff at the initial levels of
contact with the patients must be assisted to make input into the requirements of the
system.
Bibliography and Links
The Land and its people, http://www.info.gov.za/aboutsa/landpeople.htm
South Africa at a glance, http://www.info.gov.za/aboutsa/glance.htm.
Department of Health, Mission and Vision, http://www.doh.gov.za/about/index.html
Information about health challenges:
Tuberculosis,
http://www.info.gov.za/aboutsa/health.htm#Tuberculosis
AVERT, SA HIV & AIDS Statistics,
Malaria,
http://www.avert.org/safricastats.htm
http://www.info.gov.za/aboutsa/health.htm#Malaria
187
Sweden
Anna EHRENBERG
School of Health and Social Sciences, Dalarna University, Falun, Sweden
This report will give a brief overview of the development of personal health
information management systems in Swedish health care. Some examples of personal
health information initiatives will be provided and concluding reflections from a
nursing perspective presented. The intention is not to give a comprehensive overview
of the situation in Sweden.
Patients’ participation in Swedish health care
Patient participation in health care has been a cornerstone in Swedish health care
legislation and regulation for many years (SFS, 1982). Patients are expected to be
involved in decision making concerning their personal care and such involvement has
proven to have an impact on the quality of care and patient outcomes (Ruland, 1999).
In the last few years, the development of the “24 hour society” has been a strong
movement in Swedish society, enabling citizens to be more autonomous and have
access to information independent of time and place. Public demands for more
transparency and access to health care information, both on a general and personal
level, have challenged the professional power and control over health care knowledge.
Most Swedish citizens expect to have access to and be able to manage different aspects
of their lives on the Internet. This engagement has yet not been fully acknowledged and
used by the health care system. It is expected that this movement holds great potential
to change health care behaviour and enhance public health. However, few initiatives
have been taken to date to introduce information management systems that enable
patients and citizens to be active partners in their personal health care. Research about
the effects of such systems is also limited.
Personal health information management systems
The purpose of personal health information management systems is to support
collaboration in the continuity of care between health care providers and between
patients, their families and health care staff. A key tool for involving patients in
decision making concerning their care is the personal health record (PHR). The
International Standards Organisations (2009) has described the PHR as a repository of
information considered by that individual to be relevant to his or her health, wellness,
development and welfare, and for which that individual has primary control over the
record’s content.
The patient is the owner of the data in the record with rights to decide what should be
entered into the document and who should have access to the information. This means
that the patient and family can enter data into the record or allow health care providers
to contribute with data.
188
E-services in Swedish health care
In Sweden, the use of electronic services is widespread and the internet has been
accessible since the mid 1990s. Sweden is one of the leading countries worldwide
concerning broadband accessibility and Internet use. From a nursing perspective this
development has had considerable impact in that many patients with chronic illnesses
have access to more information and self care support on-line. People with health
problems can be more independent from their care providers and can, to a greater
extent, decide what information they want and where they want to obtain it. Some
examples of frequently used repositories for health care information in Sweden are:
http://www.netdoktor.se, http://www.vårdguiden.se and http://www.apoteket.se.
Electronic applications aiming to improve services for patients and citizens have
emerged the last few years but are still not widely used in Swedish health care.
Personal health management systems are not yet developed on a general level, although
there is a long tradition of patient held paper-based records, for example, in antenatal
care. Most common are e-services to facilitate patients’ access to health care, for
example, systems for renewal of prescriptions and scheduling of health care visits. One
widespread service is a “call back” function, which makes it possible for people to
indicate when they want to be called by health care providers, instead of waiting on the
phone. This service is commonly used within Swedish primary health care.
The lack of an infra-structure for IT-security and legal issues of integrity have
hampered the development of e-services for patients, particularly patients’ access to
their personal health records. A joint project of the Organisation for County Councils
and Regions in charge of health care in Sweden is “Health Care on the Web”, which
aims to develop more e-services for citizens.
Personal health records
A few projects have been initiated to make patient records accessible to patients and
promote their participation in care. An example in one county is the “Sustain Care
Account”, which made personal health care data accessible for the patients and enabled
patients to communicate with their health care providers over the Internet. Another
example of a PHR is a project within primary health care (Jerdén et al., 2004) and
school health care (Jerdén et al., 2007). This work suggests that patient-held health
records might be a useful tool for promoting lifestyle changes in primary health care.
Accessibility and security issues are crucial factors in the development of PHRs.
However, there are conflicts between the need for security and easy access for
professionals and patients. Swedish law allows the transfer of individual health data
between caregivers only with the consent of the patient, which is now emphasized in
the new Patient Data Act (SFS, 2008). This means that patients have the right to decide
if data concerning their care should be available for other health care providers.
Uncertainty among care providers about how to interpret this legislation has led to
increased risks of omissions and errors, particularly in the care of elderly and
cognitively impaired patients, when care providers have been reluctant to transfer
health care data about the patient.
189
Conclusion
Patients are increasingly being seen as partners in care, which requires health care
professionals to share their expertise and invite patients to participate in decision
making concerning their personal health care. Knowledge is growing about the
importance of patient participation and patient empowerment for more effective care
and better patient outcomes. One means of making patients and their families more
involved in care is to provide patient-held health records. Such initiatives are still
scarce in Swedish health care and need to be further developed and tested.
In the development towards more patient centred care, including involvement of
patients and families in decision making and more transparency in health care data, the
abilities and preferences of the individual patient need to be taken into consideration by
nurses. Based on research, both in Sweden and internationally, it should be recognised
that all patients do not wish to be actively involved in decision making concerning their
care, and that nurses and patients may disagree concerning patients preferences to be
active partners in care (Florin et al., 2006). Also, Swedish research has uncovered
resistance among professional carers towards the introduction of information and
communication technology applications in elder care. Nurses in elder care perceived
information and communication technology as a promoter of both inhumane and
humane care, a duality that seemed to make them defensive and resistant to change
(Sävenstedt et al., 2006). Although the development of personal health records holds
great potential for positive patient outcomes, individual patient’s abilities and
preferences for active participation in care need to be taken into account.
References
Florin, J., Ehrenberg, A., Ehnfors, M. (2006). Patient participation in clinical decision making in nursing: a
comparative study of nurses’ and patients’ perceptions. Journal of Clinical Nursing, 15, 1498-1508.
International Standards Organization. (2009). NIWP N09-011. Personal Health Records: Definition, Scope
and Context, Draft Technical Report. Geneva: ISO.
Jerdén, L., Weinehall, L. (2004). Does a patient-held health record give rise to lifestyle changes? A study in
clinical practice. Family Practice, 21(6), 651-653.
Jerdén, L., Bildt-Ström, P., Burell, G., Weinehall, L., Bergström, E. (2007). Personal health documents in
school health education: a feasibility study. Scandinavian Journal of Public Health, 35(6), 662-665.
Ruland, C. (1999). Decision support for patient preference-based care planning. Effects on nursing care and
patient outcomes. Journal of the American Medical Informatics Association, 6, 304-312.
SFS. (1982). Hälso- och sjukvårdslagen (The Health Care Act). Svensk författningssamling 1982:763. Liber,
Allmänna Förlaget, Stockholm, (In Swedish). Retrieved from
http://www.notisum.se/rnp/sls/LAG/19820763.htm
SFS. (2008). Patientdatalagen (The Patient Data Act). Svensk författningssamling 2008:355. Liber, Allmänna
Förlaget, Stockholm, (In Swedish). Retrieved from http://www.notisum.se/rnp/sls/sfs/20080355.PDF
Sävenstedt, S., Sandman, P.O., Zingmark, K. (2006). The duality in using information and communication
technology in elder care. Journal of Advanced Nursing, 56(1), 17-25.
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Switzerland
Patrick WEBERa and Christian LOVISb
a
Representative of Swiss Nursing Association to EFMI NursIE & IMIA-NI
b
President of Swiss Medical Informatics Association
In June 2007, Switzerland launched a federal eHealth strategy with ambitious
objectives. Due to the political organisation of Switzerland, where healthcare is mostly
managed at the Canton level, a coordination group has been organized in order to
promote eHealth and insure interoperability between the Canton’s initiatives. This a
challenging task: Switzerland has not one Minister of Health, but 26, that is, one for
each Canton. Therefore this effort to coordinate the development at a national level is
remarkable. More information can be found on the project’s website: http://www.ehealth-suisse.ch
Benefits for citizens
Citizens will be the major beneficiaries of the national eHealth projects (eHealth
Switzerland, n.d.). It is expected that better management of information, the use of a
continuity of care record, smoother administrative processes and ePrescription will help
in controlling costs, and thus have an effect on insurance taxes. Quality and safety of
care will also be improved, with better availability of information and decision-support.
Access to the record by the citizens will be possible and they will be able to grant
accesses to care providers, thus empowering patients and reinforcing privacy. Finally,
the Swiss Insurance card will hold an emergency dataset which should improve
emergency care. Some of these aspects are detailed below.
Emergency data
Mobility is increasing, and a growing part of the population, due to aging, has diseases
and is taking drugs. Therefore, it is crucial to access this information, reliably, in case
of emergency, at any location: home, on the road, in ER’s. The Swiss Insurance Card
supports the storage of a dataset of personal information that can be accessed in
specific cases and can be updated by care providers. Though a small dataset, it holds
major information, such as who to contact in case of emergency, drugs taken, allergies,
for example.
Safer care
The US National Institutes for Health (Institute of Medicine, 1999) report “To err is
human” indicated that medical errors kill more people in the US than car accidents.
Providing access to the patient’s history, access to the right data at the right time, and
being able to take well informed decisions and actions has been shown to be a major
tool to improve care safety. In addition, these tools can provide decision-support during
prescribing, such as interactions alerts.
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Improved administrative processes
The Swiss insurance and billing system is very complicated, especially for inpatient
care. It is a mix of fee-for-services, DRG-based reimbursements and per diem fees,
amongst others. In addition, insurance coverage can be very complex, with numerous
insurances involved for a single case. Comprehensive management of these
administrative processes should lead to savings.
Patient empowerment
A comprehensive role-based access control system with strong identification,
authentication and traceability in addition to the reinforcement of the law that states
that the data belong to the patients will promote patient empowerment in Switzerland.
Useful and reliable online health information
As part of the Swiss eHealth strategy, useful and reliable online health information has
to be made available for the citizens. This will be provided through a trusted and
certification process of websites, such as the HON code (www.hon.ch).
The Current Situation
Despite a late start, international comparisons show that Switzerland is not so late in
the development of the eHealth. This is due to the difficulties of introducing eHealth
solutions and the need for maturation. Many countries started several years ago but
have not shown substantial deployment. However, Switzerland is facing numerous
challenges, including multilingual needs, 26 Cantons and little federal power in
healthcare. Therefore, the strategy proposes an ambitious planning under the
supervision of a Federal-Cantons coordination group.
Insurance card
Starting in 2010, a Euro-compatible Swiss Insurance Card (SIC) will be distributed to
all citizens. The SIC will also have a chip that can hold emergency data. This card is
intended firstly to simplify administrative processes, such as patient administrative data
and insurance coverage. But the chip has also a crypto-processor and can convey
several certificates in order to allow authenticated connections to access secured health
data. On the care provider side, the Health Professional Card will be distributed
probably in 2010 for physicians. This card will also allow identification and
authentication of care providers, clarify roles and will support various levels of
certified signatures.
Proposed architecture
Recommendations have been made for the principles of the architecture that is
currently foreseen. The architecture supports strong decentralisation for patients and
care providers indexes, and for content such as documents. It therefore supports the
political organisation of Switzerland.
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Cantons’ projects
Because of the Cantons’ predominance for health-related issues, the Swiss strategy
does emphasize the role of Cantons for the implementation. For example, the Canton of
Geneva has now an eHealth Law that clarifies rules and processes. A large
implementation of eHealth is currently being prepared, the project ‘e-toile’, and pilots
will start at the end of 2009.
Personal health data
Numerous systems are available for citizens to store their own personal health records,
some of which are operated in Switzerland. There are no good figures to measure how
these systems are currently being used. One Swiss consumer journal prepared a special
issue about health documents on the Internet in which some voices objected that the
use of some websites for storing health related data is not trustworthy and is limited,
especially quoting GoogleHealth or MS HealthVault.
As shown by a survey of TA-Swiss (Technology-Assessment Switzerland), the
electronic health record is viewed positively by the Swiss population. This survey
shows that very few citizens are against the usage of an electronic patient record. Most
of the citizens are in favour of having confidential data available for care providers
with a specific protection. Citizens would like to determine which data should be stored
and who can access it.
Conclusion
eHealth is becoming a priority in Switzerland and is considered as a major tool to
improve care efficiency, safety and to empower patients. But introducing eHealth is a
challenging task, addressing human, societal, political, ethical, legal, economical and
technical issues. All aspects, effects and impacts of eHealth are not well understood
and the future might hold some surprises. For example, there are some discussions
about a new “disease” named cyberchondia - a disease suspected when a patient feels
sicker than they should be, caused by an overflow of information.
References
eHealth Switzerland (n.d.) For the Population Swiss confederation and Heath Canton’s
Directions Swiss conference. Retrieved from http://www.e-healthsuisse.ch/nutzen/00035/index.html?lang=fr (in french)
Institute of Medicine. (1999) To Err is Human. Building a safer Health System. In:
Kohn L.T., Corrigan J.M., Donaldson M.S. (eds) National Academy Press.
193
Taiwan
Wen-Shan JIAN and Polun CHANG
Health Care in Taiwan
Taiwan is located in the western Pacific among Japan, the Philippines and mainland
China. With a total area of about 36,179 square kilometers, Taiwan is 394 kilometers
long and 144 kilometers wide at its widest point. Taiwan's population was estimated in
August 2009 to be around 23 million. Life expectancy is 81 years for women and 75
years for men; the infant mortality rate is 6.29 per 1,000 live births. The ratio of
physicians to patients and the number of specialists compare favorably with those in
most developed countries.
In addition to private practice, Taiwan's 37,099 physicians, 11,093 dentists and 11,573
pharmacists pursue their professions as members of hospital staff and neighborhood
clinics. About 20,364 nurses are registered nurses, and 82,403 are registered
professional nurses. There are 515 hospitals and 17 medical centers in Taiwan. Most
provide general medical care, but there are also psychiatric facilities, skilled facilities
that provide geriatric care, and rehabilitation services. Average length of stay for
inpatient admissions are 10 days for all acute care hospitals and 40 days for all
hospitals combined.
Electronic Medical Records
The most significant movement promoting the electronic medical records (EMR) in
Taiwan can be traced back to 1995 when the national health insurance program was put
into practice. The main purpose of implementing EMR at that time was for
reimbursement, and not for supporting caring, clinical decision making, or even patient
wellbeing. Any need not related to reimbursement was not on the priority list of
information system implementation for hospitals. As a consequence, nursing
information systems were largely overlooked because nursing care was not a formal
item in the long reimbursement list.
It was not until the last decade that the values of EMR were widely reexamined
following the establishment of two formal medical/health informatics graduate
programs in the Taipei Medical University and the National Yang-Ming University.
The EMR movement has been on track with the active promotion from the Taiwan
Medical Informatics Association and others like Health Level Seven Taiwan, the
Taiwan Nursing Informatics Association, and many newly established informatics
programs, such as the department of medical informatics, Tzu Chi University.
Of course, the Ministry of Health played the most significant role in terms of funding
and policy making. In recent years, the Taiwan government has been actively
promoting the EMR and electronic health records (EHRs). In addition to setting up
194
relevant institutions, the government also promotes many policies, including:
promotion of health care IT standards: HL7 (Health Level Seven),
DICOM(Digital Imaging and Communications in Medicine), LOINC(Logical
Observation Identifiers Names and Codes), etc.
an EHR pilot project: TMT -Taiwan Electronic Medical Record Template
(Jian, Hsu, Hao, Wen, Hsu, Li & Chang, 2007)
making laws and regulations: Regulations Governing and Development and
Management of Electronic Medical Records (Jian, Hsu, Wen & Yang, 2008)
implementation of the NHI (National Health Insurance) IC Card. The medical
system of Taiwan has ushered in a new era in January 2004 when almost all
Taiwan people started using with the NHI IC Card. Citizens going for medical
institutions only need to show the NHI IC card to receive all needed medical
services. This was the foundation of identity development for personal health
records (PHRs)
establishing the Healthcare Certification Authority (HCA). The Department of
Health established the HCA and conducted studies to initiate the IC card
system for medical institutions and medical personnel for the EHR signature.
The use of electronic signature encryption capability to ensure that p sensitive
information about people receiving health care and treatment will not be
disclosed. The HCA provided API software to test and verify EHR signature.
The above achievements created a very rich and sufficient infrastructure for us to
promote the personal health record and information management in Taiwan and many
creative projects are underway based on these accomplishments. A representative
project to promote the personal EHRs was built using the TMT templates (Jian et al.,
2007) which will be introduced below.
The Portable Patient EHR (PHR) Approach
Based on the TMT templates and the Hospital Information System gateway, we are
experimenting to build and extract patients’ EHRs in XML format from hospital
information systems and to store those into a general file server as a PHR mini-server
or the larger EHR paperless server for sharing and exchanging (Jian et al., 2007). With
authorization by the patients, the document-based XML files in the PHR can then be
exchanged among various institutes through the following four pathways, as follows:
1.
2.
3.
4.
via portable devices owned by the patient for private use. Devices such as
USB flash memory, compact disks, PDA, cell phones, etc. are all good devices
to store these XML files. Hospitals can also provide a PHR viewer for patients
to see their EHR in private
the patient can personally transfer his/her EHR from one hospital to the next.
In addition to providing medical references for medical professionals, patients
can seek appropriate medical services on their own too
a network that can communicate between hospitals via the Internet. This needs
the authorization of the patient, and
with a patient's request and their authorization, the Internet can be used to
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access medical records of patients stored in EHR banks, so that patients at any
place and time can directly access their medical record.
Some Representative PHR Projects
The development and application of PHRs in Taiwan has caught the attention of many
researchers and healthcare professionals. Many creative projects are underway but the
majority does not yet take account of the patients’ perspectives to realize the benefits of
PHRs. Most of published results are still from the clinical and technical perspective,
although it has been observed that some PHR projects have begun to put patients at the
center of implementing PHRs, for example, providing mothers with a first new born
baby a smartphone-based PHR for their babies after discharge from the hospital. More
results should be reported in the future but some examples of projects are summarised
below.
RFID (Radio Frequency Identification)
The Industrial Technology Research Institute of Taiwan developed a high-frequency
RFID chip and the "history of exposure to medical institutions RFID tracking control
system" in 2004. From then on, RFID has been used in the study of medical and PHR.
Recently, it was used to bind with medical records so the system can clearly track the
flow of medical records.
The IHE (Integrating the healthcare Enterprise) and the IHE-Based Personal Health
Record Management System
Since the implementation of National Health Insurance program in Taiwan, the quality
of healthcare has been increased remarkably. However, the public has also increased
the demands for better understanding and managing of their health related information.
In general, current personal health information is stored in healthcare institutions and
the accessibilities of that information are limited for public. This study developed a
Personal Health Record Management System (PHRMS) to combine the features from
various IHE integration profiles and use Web services technologies to build this
integrated system (Chen, Lin & Chang, 2009). The PHRMS can manage data from
different healthcare information systems and has friendly user interfaces that users can
integrate or exchange personal health information easily. It also put the privacy and
security into serious concern. This project has provided a representative model for the
exchange of PHRs in Taiwan.
Health2.0 Personal Healthcare Management System
This study utilized concept of Health2.0 to design a personally healthcare management
system (Huang, Chuang & Chiang, 2009). Using text-to-speech and web phone
techniques, it helped users to realize and manage personal health and effects of
medication and also assured patients’ compliance and medication safety.
A Patient-centric Real-time Two-way Referral System
The traditional referral process is a time consuming and inefficient procedure. Our
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Ministry of Health started implementing a medical referral project in July, 2005. In this
study, a web-based electronic referral system was implemented so any registered
physician could refer the patients to any other medical organization registered in this
system (Yu, Ho, Wang, Sung & Lin, 2009). Any medical images, such as the MRI,
XRays, and other pathologic examining results, could be sent to the referred hospital
together with the EHR as a compressed file.
Home-based Medical Information Integration System
The Industrial Technology Research Institute proposed a home-based medical treatment
information integration system which could detect medical devices and then collect
data through wire or wireless network and send those data to remote nursing platforms
with secure mechanism (Wu, 2009). Those data in the remote nursing platform were
then used by doctors or nurse practitioner to diagnose patients’ health situations. Key
components in this system are UPnP (Universal Plug and Play), Web Service, and SSL.
References
Jian, W-S., Hsu, C.Y., Hao, T.H., Wen, H.C., Hsu, M.H., Li, Y.C. & Chang, P. (2007) Building a portable data
and information interoperability infrastructure-Framework for a Standard Taiwan electronic medical record
template. Computer Methods and Programs in Biomedicine, 88(2), 102-11.
Jian, W-S., Hsu, Y-N., Wen, H-C. & Yang, C-M. (2008) An international comparative study of the legal
environment of electronic medical records. The Journal of Taiwan Association for Medical Informatics,
17(1), 31-40.
Chen, P-W., Lin, Y-H. & Chang, H-K. (2009) An IHE-Based Personal Health Record Management System.
In: 2009JCMIT (Joint conference on Medical Informatics in Taiwan) Proceedings, Taipei.
Huang, W-T., Chuang, H-H. & Chiang, I-J. (2009) Using concept of health2.0 to construct a personal
healthcare management system. In: 2009JCMIT Proceedings (Joint conference on Medical Informatics in
Taiwan), Taipei.
Yu, T-Y., Ho, HH., Wang, Y., Sung, Y-W. & Lin, Y-W. (2009) Construction of patient-centric real-time
two-way referral system. In: 2009JCMIT Proceedings (Joint conference on Medical Informatics in Taiwan),
Taipei.
Wu, J-N. (2009).Home side Medical Information Integration System. In: 2009JCMIT Proceedings (Joint
conference on Medical Informatics in Taiwan), Taipei.
Links for information about Taiwan
Taiwan's Geography and Climate:
http://www.asianinfo.org/asianinfo/taiwan/pro-geography.htm
Health care information development in Taiwan:
http://203.65.42.165/e-learning/material/Exhibit_95/health_info.ppt
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United States
Suzanne BAKKENa, Patricia BRENNANb, Leanne CURRIEc, Patricia DYKESd,
Kathy JOHNSONe, Susan NEWBOLDf and Diane SKIBAg
a
School of Nursing and Department of Biomedical Informatics, Columbia University,
b
c
School of Nursing, Columbia University, New York.
d
Clinical Informatics Research and Development, Partners HealthCare and Harvard
Medical School, Boston
e
School of Nursing, University of Wisconsin-Madison
f
Vanderbilt University, Nashville
g
University of Colorado Denver, USA
Current State of Deployment
The state of personal health information management systems (PHIMS) in the US is
rapidly evolving from paper-based tools to online personal health records (PHRs).
PHRs are best thought of as a suite of interoperable tools that help individuals track
health status and meaningfully engage in health practices and health care. Anchored in
data sources like electronic health records, PHRs may also include communication
utilities, data interpretation and visualization routines, and access to knowledge
resources such as evidence based guidelines, quality ratings of clinicians and health
care providers, and public health alerts. Individuals can use a variety of electronic
devices, such as ‘smart’ cell phones, web browsers, and intelligent devices to interact
with PHR tools; output may appear in the forms of reports printed on computer screens
or papers, audible warnings, or electronic messages sent automatically to their care
team. There is less work being done on other approaches for personal health
information management such as the use of social network sites.
Three PHR models are dominant in the US: stand-alone, tethered and integrated. These
three differ in respect to how content is created or populated, who controls or owns the
record, and the degree of patient accessibility (Detmer, Bloomrosen, Raymond & Tang,
2008). Currently nine percent of consumers surveyed have a PHR; 42 percent are
interested in establishing PHRs that are connected online to their physicians (Deloitte,
2009). PHRs are used more often when people have the opportunity to not only manage
their own personal health data, but also given tools that help them manage their
families’ health, as in the tethered PHR of Kaiser Permanente (Seidman, 2009).
The Medical Library Association (MLA)/ National Library of Medicine (NLM) Joint
Electronic Personal Health Records Task Force enumerated a list PHRs that are
electronic (web, CD, USB) and used beyond a single hospital or employer (Table 1).
Many of these are stand alone options. While not PHRs themselves, GoogleHealth and
Microsoft Healthvault are providing the foundation for some PHIMS development in
the US. Many institutions have moved or are moving toward tethered PHRs. Kaiser
Permanente and the Department of Veterans Affairs (http://www.myhealth.va.gov/) are
two large healthcare systems with a substantial PHR user base. Details are provided for
two additional examples are Patient Gateway at Partners and MyHealthatVanderbilt.
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Patient Gateway is a secure, web-based patient-portal developed by Partners
HealthCare in Northeastern, MA, USA (Grant et al., 2006). Patient Gateway facilitates
communication between patients and their providers over the internet and provides a
means for patients to request prescription refills, schedule appointments and authorize
insurance authorization electronically. Patients and authorized representatives use
Patient Gateway to send secure messages to the practice and access understandable and
valid health information online. Providers can save copies of Patient Gateway
messages in the Longitudinal Medical Record (LMR) as a communication note. Recent
enhancements to Patient Gateway include features to engage patients in the medication
reconciliation process and to report medication side effects. In addition, Patient
Gateway has tools to support patients in management of chronic illness, in entering
personal health information, in updating family history and in promoting adherence to
national health maintenance guidelines.
Table 1- PHRs in the United States
AHIP PHR Standards
Allscripts Patient Portal
Angel Key
Band of Life
Benefits Manager (American
Airlines)
CapMed
Care Memory Band
Chart Scout
CheckUp
Dr. I-Net
E-HealthKEY (MedicAlert)
EMRy Stick
Enterprise Patient Portal
ePHR
Evolution PHR
FollowMe
FullCircle
Global Patient Record
Google (still in development)
Handymedical.com
Health Account Basic
HealthFile
HealthFrame
HealthVault (Microsoft)
iHealthRecord
Indivo (Dossia)
InfoVivo
iPHER
IQHealth
KIS Medical Records
LAXOR
LifeLedger
LifeSensor
MedCard Online/Med-Id-Card
MedCommons
MedDataNet
MedeFile
Medic Tag
Medical Passport
MedicAlert
MediCompass
mediKEEPER
MediStick
MedInfoChip
MedNOTICE
My Family Health Portrait
My Health Connection
My Health Record
My HealtheVet
My MediList
My Medical CD
MyActiveHealth PHR
MyChart (Epic)
myCIGNA
MyFamilyMD
MyHealth123.net
MyHealthAtVanderbilt
myHealthFolders
MyLife
MyMedicalRecords.com
MyMedicare.gov
myNDMA
myuhc.com
NoMoreClipboard.com
PHR4me
PatCIS
Pathway Technology
PatienTrak
Patient Power
Peoplechart
Personal Health Record (PepsiCo)
Portable Health Profile
ProfileMD
ReliefInsite.com (using Facebook)
Securamed
SGMSCorp
SynChart
Telemedical.com
The Smart PHR
Touchnetworks H.U.B.
Vital Key
Vital Records
VitalChart
Vividea (Lifetime Personal Health
Software)
Waiting Room Solutions
WebMD Health & Benefit
Manager
MyHealthatVanderbilt (http://www.myhealthatVanderbilt.com) has approximately
24,000 users and includes the following features:
Remote viewing of personal medical information, including laboratory test
results, diagnostic imaging reports, medication lists, allergies, and vital signs.
Laboratory results with normal ranges, patient historical values, trending
graphs.
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Interactive messaging to ask caregiver questions and request new
appointments.
Single chart of all appointments with contact, location, and parking
information
Ability to pay Vanderbilt bills online.
Topics on relevant medical information populated based on patient age and
diagnosis (pulled from billing codes).
Ability to assign delegates to act on their behalf for these functions.
Links to Vanderbilt University Medical Center (VUMC) phone and other
resource directories.
Internal organizational features include linking directly to StarPanel (VUMC’s
internal electronic health record system).
The distinction between tethered and integrated PHRs is not totally clear in the
literature in the US. In a recent New England Journal of Medicine perspective, Tang
and Lee (2009) argued that an “integrated PHR that is an extension of physicians'
electronic health records (EHRs), will go further in facilitating the type of physician–
patient relationship that will improve health and health care, at a lower cost.” They
estimated that millions of patients are using such integrated PHRs and provide the
example that 50% of patients at the Palo Alto Medical Foundation clinic use their
online portal (http://www.pafmonline.org ).
Detmer et al., (2008) consider the tethered PHR as a subset of integrated,
interconnected or networked PHRs because the latter are populated with patient
information from a variety of sources (e.g., EHRs, insurance claims, pharmacy data,
home diagnostics) and allow patients to enter data into some portions of the PHR. A
number of major US healthcare organizations have partnered with either Google or
Microsoft to move toward this vision. For example, the Cleveland Clinic established a
partnership with Google and Mayo Clinic has partnered with Microsoft HealthVault.
A number of large organizations including Walmart, and Intel are providing or
planning to provide access to PHRs for their employees. Walmart and Intel are
members of a consortium of companies that have joined together to form the non-profit
organization Dossia (www.dossia.org). In collaboration with Children’s Hospital of
Boston and using the platform Indivo (http://indivohealth.org/), Dossia offers an
employer-sponsored electronic personally-controlled health record (PCHR) that pulls
data from multiple sources and functions as a repository for ‘lifelong health
information.’ Data in the Dossia application are controlled by the patient and the
application is integrated into WebMD. After a pilot phase, the retail chain Walmart
deployed the Dossia application to its nearly 2 million employees as part of the
employee benefit selection process for 2009. (Kolbasuk McGee, 2008). Progress to
date has not been reported, but it will be interesting to follow the employer-sponsored
activities as they move forward.
Government and Foundation Initiatives
A number of governmental agencies (including the previously described Veterans
Affairs) and other organizations have initiatives related specifically to PHRs.
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The Obama administration has earmarked 19 billion US dollars for health information
technology (HIT), including the adoption of electronic health records. Nationwide,
adoption of HIT among physicians is slowly rising – from 10 percent in 2005 to 14
percent in 2007 (US Department of Health and Human Services, n.d.). Receiving
federal funds is tied to “meaningful use of EMRs”. This phrase has been
predominantly interpreted as referring to what constitutes meaningful use by providers.
However, Kibbe and Klepper (2009) suggest that patients need to be included in this
discussion. These authors state that this money “could be re-imagined to take
advantage of the new ways millions of consumers, patients, and care giving families
are using information and communications technologies to solve problems, form online
communities, and share information and knowledge.”
The Centers for Medicare and Medicaid Services (CMS) has been engaged in a number
of pilot projects for PHR use among Medicare beneficiaries:
Medicare PHR Choice - for people with original Medicare living in Arizona
and Utah.
MYPHRSC - for people with original Medicare living in South Carolina.
Medicare Advantage/Part D Drug Plan PHRs.
CMS has also launched a broad informational and educational campaign for
their beneficiaries regarding PHRs.
In Project HealthDesign (www.projecthealthdesign.org ), a US-based initiative funded
by the Robert Wood Johnson Foundation, design teams work collaboratively with lay
people and their clinicians and family caregivers to create new types of PHR tools. A
core technical platform facilitates technical tasks common to most PHRs, such as
identity authentication and authorization or medication list management.
Lay people think of PHRs as tools to help them better understand health in everyday
living by monitoring highly individualized cues that give insight into the person’s
health state and response to clinician-directed therapies. Labeled by the teams as
“observations in daily living”, these cues include sensations and behaviors like mood,
appetite, ability to walk a certain distance without pain, sexual satisfaction, and
numbers of nights of un-interrupted sleep. The premise of Project HealthDesign is that
PHRs may lead to better health and health care when they are designed to help people
monitor health in everyday living, understand patterns that indicate improvement or
disruption in progress towards health goals, and integrate these observations into
clinical care conversations.
Connecting for Health, a public-private collaboration, has facilitated three phases of
work related to PHRs and personal health technologies
(http://www.connectingforhealth.org/workinggroups/personalhealthwg.html). In Phase
one, The Personal Health Working Group identified consumer requirements, concerns,
and values that must be addressed as PHR technology is refined and implemented.
Products included: a baseline framework of the best available evidence regarding
expected benefits of PHR as well as consumer and patient requirements. They also
promoted the development and/or identification of data standards relevant to the PHR.
Phase two focused on coordination between EHR and PHR.
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The focus of the Phase 3 work of Connecting for Health is enabled through a Personal
Health Technology Council that identifies and recommends solutions for policy
challenges affecting the adoption of PHRs and related technologies with a sharp focus
on the needs and concerns of consumers.
Nursing Education Initiatives Related to Informatics and PHIMS
Beyond the accomplishments of individual institutions in educational initiatives related
to PHIMS, there are several important events that have occurred in the United States to
prepare nurses to practice in technology rich environments. The first is the recent
release of the TIGER Phase II Collaborative Report. This report highlights the work of
the nine collaboratives and how each one has used the intellectual and social capital of
the various nursing professional organizations to move TIGER’s agenda of preparing
the next generation of nurses (www.tigersummit.com/).
Second, the National League for Nursing has been promoting their position statement,
“Preparing the Next Generation of Nurses to Practice in a Technology-rich
Environment: An Informatics Agenda.” Following up on the recommendations in this
position statement, the NLN has a Task Group developing a Faculty Development
Toolkit for Integrating Informatics into the curriculum. The Task Group is committed
to continue its campaign to raise the awareness about the integration of informatics into
the nursing curriculum and to provide necessary resources for faculty.
(www.nln.org/aboutnln/PositionStatements/index.htm).
Third, the American Association of Colleges of Nursing has released its Essentials for
Baccalaureate Education and has included an essential on information management.
They also have informatics competencies as part of the Doctorate of Nursing Practice
Essentials. The competency documents are available at:
www.aacn.nche.edu/Education/bacessn.htm and
www.aacn.nche.edu/DNP/pdf/Essentials.pdf
Lastly the Quality and Safety Education for Nurses (QSEN) Project focuses on the
integration of five core competencies in pre-licensure programs. These five core
competencies include informatics. Fifteen pilot schools have been implementing this
curriculum and their work is available on the QSEN site: http://qsen.org
Key Nursing Issues Related to the Design and Use of PHIMS
Despite significant effort toward the design and use of PHIMS, several gaps exist. In
terms of design, the consumer or patient voice has yet to be valued and captured in a
meaningful way rather it has been recorded through someone else’s lens, or has been
distilled to available words from a dropdown menu. Shared access to this narrative
within a PHR may foster a richer dialogue between patient and provider, creating the
opportunity for more thoughtful and congruent treatment approaches. Second, there has
been little integration of decision support strategies into existing PHRs. Third, there is a
need for PHR designs suitable for individuals with low levels of functional literacy and
computer literacy.
202
Other design-related issues relate to the dearth of research regarding use of social
network approaches as personal health information management strategies or
integration of patients’ mental models or conceptions of phenomena such as wellness
or healthy aging.
In terms of use of PHIMS, most nurses in clinical practice are unaware of PHIMS such
as PHRs and have not directly integrated them into their nursing practice. These tools
provide nurses a key opportunity to be consumer and patient advocates and educators
in new ways. However, to take advantage of this opportunity, nurses must build upon
their existing advocacy and education competencies. Nurse researchers also require
new types of competencies to integrate PHIMS as intervention strategies and to mine
PHIMS for research purposes. PHRs, in particular, are suitable for meeting some types
information needs related to patient data or a particular institution (e.g., What is my
laboratory test result? Who is my nurse case manager? What hours is the clinic open?).
However, their use also results in additional information needs regarding the healthcare
domain (What does this radiology finding mean?) Informatics strategies are needed to
integrate answers to such questions as part of PHIMS in a manner that meets patients’
needs.
Agenda for Action
An agenda for action should include items related to design and use of PHIMS.
Design:
Explore the potential for patient participation within a PHR in the form of a
narrative.
Build tools which capture patient conception and context within the PHR that
are useful to all stakeholders: consumer/patient, provider and payer.
Explore social network technologies as PHIMS
Implement PHIMS technologies suitable for use by those with low functional,
health, and computer literacy
Integrate informatics strategies to answer patient-specific, institution-specific,
and domain-specific information needs
Build tools to manage, represent and mine the myriad of incoming data
Use:
Educate consumers, patients, clinicians, educators, researchers, and policy
makers regarding use of PHIMS and data generated from PHIMS
Use PHIMS information to create care (including interventions) that is
concordant with patient conceptual and contextual data.
Advocate for funding to support use of PHIMS
203
References
Deloitte, LLP. (2009). Survey of Health Care Consumers. Retrieved from
http://www.deloitte.com/dtt/article/0,1002,sid=80772%26cid=252396,00.html
Detmer, D., Bloomrosen, M., Raymond, B., & Tang, P. (2008). Integrated personal
health records: Transformative tools for consumer-centric care. BMC Medical
Informatics and Decision Making, 8, 45.
Grant, R. W., Wald, J. S., Poon, E. G., Schnipper, J. L., Gandhi, T. K., Volk, L.,
Middleton, B. (2006). Design and implementation of a web-based patient portal linked
to an ambulatory care electronic health record: patient gateway for diabetes
collaborative care. Diabetes Technology & Therapeutics, 8(5), 576-586.
Kibbe, D & Klepper, B. (2009, May 21). Bringing patients into the health IT
conversation about “meaningful use”. The Health Care Blog. Message posted to
http://tinyurl.com/o56ykw.
Kolbasuk McGee, M. (2008, October 1) Wal-Mart Rolls Out E-Health Records To All
Employees. InformationWeek. Retrieved from http://www.informationweek.com/
news/ software/ database/showArticle.jhtml?articleID=210605059
Seidman, J. (2009, May 20). PHR Evolution. The Health Care Blog. Message posted
to http://www.thehealthcareblog.com/the_health_care_blog/2009/05/i-participated-ina-personal-health-record-phr-workshop-yesterday-hosted-by-the-center-for-democracytechnology-cdt-cdt.html
Tang, P. C., Lee, T. H. (2009) Your doctor’s office of the Internet? Two paths to
personal health records. New England Journal of Medicine, 360, 1276-1278.
US Department of Health and Human Services (n.d.). Health Information Technology,
Vision for Health IT. Retrieved from http://tinyurl.com/q3xmxh.
CONCLUSIONS
207
NI Congress and Post-Congress Workshop Continuum
Kaija SARANTOa and Patricia FLATLEY BRENNANb
a
b
Scientifically, NI congresses have always had an important part in knowledge
generation for the field of health informatics. In 1993, Priorities for nursing informatics
research were assessed by the National Institute of Nursing Research and were also
reported in a Delphi study of nursing informatics research priorities in 1998 (Efken,
2003; Currie, 2005). According to Bakken, Stone and Larson (2008), many research
priorities described in 1993 continue to be relevant even today, for example, user
needs, informatics support for patients/families and consumers as well as nursing and
health care practice. However, the authors emphasise that in the next decade (20082018) the research agenda must expand and highlight the importance of
interdisciplinary and translational research. Further they state that "a nursing
informatics research agenda must support integration and use of genomic data for
nursing care and for nursing research" (Bakken et al., 2008).
Over 27 years, the congress programmes have reflected the state of the art of advances
in nursing and health informatics education, management, research as well as in the
clinical area. Based on the congress and post-congress workshop themes, nurses have
been visionary innovators, leading the development and discussions of timely concerns.
The congress themes (table 1) reflect futuristic, technical, social as well as
interdisciplinary perspectives in the field of nursing informatics. As seen in the table,
the idea of a post-congress workshop was already born together with the first
conference in 1982 (Saranto, Tallberg & Ensio, 2009).
It seems almost unbelievable that as far back as 1988 the post-congress workshop in
Dublin focused on decision support systems. However, the development path has not
been smooth and many nurses still lack both evidence-based information and technical
support in daily practice, management and education.
208
Table 1 - Themes for NI congresses and post- congress workshops 1982-2009
Year and Place
1982 London
1985 Calgary
1988 Dublin
1991 Melbourne
1994 Austin
1997 Stockholm
2000 Auckland
2003 Rio de
Janeiro
2006 Seoul
2009 Helsinki
2012 Montreal
Conference theme
Post-conference theme
The Impact of Computers on
Nursing
Building Bridges to the Future
The Impact of Computers on
Nursing
Challenges for the Future
Where Caring and Technology
Meet
Nurses Managing Information in
Health Care
Nursing Informatics: An
International Overview of
Nursing in an Technological Era
The Impact of Nursing
Knowledge on Healthcare
Informatics
Decision Support Systems
One Step Beyond: The
Evolution of Technology and
Nursing
eHealth for all: designing
nursing agenda for the future
Consumer-Centered, ComputerSupported Care for Healthy
People
Nursing Informatics Connecting Health and Humans
Health Care Information
Technology
Informatics the Infrastructure
for Quality Assessment and
Improvement in Nursing
Nursing Informatics:
Combining Clinical Practice
Guidelines and Patient
Preferences Using Health
Informatics
An Informatics Basis of
Evidence-Based Practice
Through Clinical Pathways
Patient safety
Nursing informatics 2020:
towards defining our own
future
Personal Health Information
Management: Tools and
Strategies for Citizens'
Engagement
To be announced in 2010
The aim of the post-congress workshops is to guide nurses in informatics during the
next triennial with recommendations for practice, education, management and research
published in the workshop proceedings. Each of the seven chapters reporting the
themes addressed in the post-congress workshop advances specific recommendations in
the substantive area. Below we summarise some over-arching principles to guide the
responses to the recommendations related to personal health information management
systems (PHIMS).
209
1.
Development of PHIMS is a country-specific issue
PHIMS need to complement and extend country-specific approaches to health
care. Because of the very unique nature of health care in each country, and, by
extension, the roles and responsibilities of people in their care, personal health
information management needs and demands will vary.
2.
PHIMS are not just extensions of the Electronic Health Records,
3.
As the targeted end users of PHIMS, people need to be involved in all stages of
PHIMS development and evaluation.
4.
PHIMS must be part of the national health IT initiatives
5.
Privacy, security and confidentiality considerations related to PHIMS require both
policy and technical innovations.
References
Bakken, S., Stone, W. P. & Larson, E. L. (2008). A nursing informatics research agenda for 2008–18:
Contextual influences and key components. Nursing Outlook, 56, 206-214.
Currie, L. M. (2005). Evaluation frameworks for nursing informatics. International Journal of Medical
Informatics, 74, 908-916.
Effken, J. A. (2003). An organizing framework for nursing informatics research. CIN: Computers
Informatics, Nursing, 2(6), 316-323.
Saranto, K., Tallberg, M. & Ensio, A. (2009). Connecting Health and Humans – International Nursing
Informatics 2009 Congress. Methods of Information in Medicine, 48,101-103.
APPENDIX
213
Participants in the NI2009 Post-Congress Workshop
Personal Health Information Management:
Tools and Strategies for Citizens' Engagement
BAKKEN, Suzanne
BLAŽUN, Helena
School of Nursing and Department of Biomedical
Informatics, Columbia University, New York, USA
BRENNAN, Patricia
CARR, Robyn
CASEY, Anne
CHANG, Polun
National Yang-Ming University, Taipei, Taiwan/ROC
COOK, Robyn
Sidra Medical &Research Center, Qatar Foundation, Qatar
CURRIE, Leanne
School of Nursing, Columbia University, New York, USA
DYKES, Patricia
ENSIO, Anneli
Clinical Informatics Research and Development, Partners
HealthCare and Harvard Medical School, Boston, USA
School of Health and Social Sciences, Dalarna University,
Falun, Sweden
University of Kuopio, Finland
ESPINOSA, Carme
University Ramon Llull. Barcelona, Spain
GOOSSEN, William
ICT innovations in healthcare at Windesheim, and Results 4
Care, the Netherlands
Faculty of Medicine, Institute of Nursing & Health Sciences,
University of Oslo, Norway
Nursing Research Group of Madeira, Servico Regional de
Saude, Portugal
School of Nursing, University of Wisconsin-Madison,
Madison, WI, USA
EHRENBERG, Anna
HELLESØ, Ragnhild
JESUS, Elvio
JOHNSON, Kathy
JUNTTILA, Kristiina
KOURI, Pirkko
MARIN, Heimar
MOEN, Anne
Unit of Health Care, Savonia University of Applied Sciences,
Kuopio, Finland
Faculty of Medicine, Institute of Health Sciences, University
of Oslo, Norway
214
MURRAY, Peter
NEWBOLD, Susan
Centre for Health Informatics Research and Development
(CHIRAD), Nocton, UK
Lawrence S. Bloomberg Faculty of Nursing, University of
Toronto, Canada
Vanderbilt University, Nashville, TN, USA
PARK, Hyeoun-Ae
SARANTO, Kaija
SENSMEIER, Joyce
SKIBA, Diane
Healthcare Information and Management Systems Society
(HIMSS) Chicago, IL USA
Center for Health Services Research, Catholic University
Leuven, Belgium
University of Colorado, Denver, USA
STRACHAN, Heather
TSURU, Satoko
School of Engineering, University of Tokyo, Tokyo, JAPAN
WEBER, Patrick
Nice Computing, Lausanne, CH and Chair of Nursing
Informatics Europe by EFMI
NAGLE, Lynn
SERMEUS, Walter

Personal Health Information Management

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